Health Care Survey

We have two more sets of survey questions. This week’s questions are all about health care related topics. Next week is a mix of all the questions I couldn’t figure out how to categorize.

As always anyone who identifies as autistic is welcome to participate. You can answer here in the comments or anonymously at Survey Monkey.

  1. Do you have more dental issues than your peers? Do your autistic children have more dental issues? Do cleanings hurt you more than fillings?
  2. Do you find there are certain medical staff that are better at your autism disclosure than others (nurses better than doctors, blood test/ lab workers better than nurses, specialists better?) ect?
  3. Do you have a code word or phrase that helps you the most during emergency appointments?
  4. How do you manage sensory issues at the doctors?
  5. Does the anesthetic or freezing cause more pain after than not having it for fillings that do not involve the roots? Do you have unusual reactions to the freezing agents?
  6. Do you find you act more or less autistic at the Dentists? Do you prefer to disclose or leave out your diagnosis at the Dentists? Is there any trick that helps you get through the appointments?
  7. Do you go for the usual tests or do you wait them out longer because the side effects of said tests usually cause you more problems than the test themselves? ( e.g. colonoscopy, mammogram, gastroscopy.)
  8. Do you have unusual side effects to anesthetics,  painkillers or other medications?
  9. Does naturopathy generally accept you and address your issues better than allopathy?
  10. Does mental health support normally apply to you or do you find you defy the odds of symptomatic depression, anxiety etc. and need alternatives? What would you suggest to a doctor if you could in this regard?

43 thoughts on “Health Care Survey”

  1. anonymous answers from Survey Monkey:

    Q1: Yes
    N/A
    No
    Q2: Not officially diagnosed. Never discussed it with my doctor as I haven’t been in 4+ years.
    Q5: Not sure if you are talking about freezing sensitivity after the filling is done or something else. If it is the increased sensitivity to cold things after a filling, that sucks hard.
    Q6: Don’t disclose.
    Q8: No
    Q10: No idea.

  2. anonymous answers:

    Q1: Cleanings are so painful I cannot stand them.
    Q2: none
    Q3: no
    Q4: with difficulty, it is too noisy.
    Q5: no
    Q6: no
    Q7: i dread the test and afterwards
    Q8: usually very sick
    Q9: sometimes
    Q10: Doctors don’t take suggestions, yes I have ongoing mental health problems and they only suggest medications.

  3. anonymous answers:

    Q1: No; N/A; Yes.
    Q2: I don’t know yet … I’m newly diagnosed.
    Q3: No, I hadn’t heard of this method before.
    Q4: With difficulty.
    Q5: No.
    Q6: More; I haven’t been since my diagnosis; Nitrous Oxide.
    Q7: I tend to put them off as long as possible.
    Q8: Not that I’ve noticed, other than one painkiller that had no effect at all.
    Q9: Haven’t tried it yet.
    Q10: Traditional mental health methodology either has no effect, or it backfires on me. I would prefer that they be honest, clear, & direct, instead of trying to manipulate my emotions to feel like things are better than they really are.

  4. My answers:

    1. I don’t think so but I’m not sure what’s typical for people my age. Cleanings are uncomfortable but I’ve had so much work done on my mouth in terms of braces, a broken jaw and multiple pulled teeth that cleanings feel comparatively minor and routine.

    2. So far, the doctor who reacted best was my gynecologist. Go figure. She took it very casually but not in a dismissive way and treated me exactly the same before and after I disclosed. Other doctors have made general assumptions about autism that I then had to work hard to counter. The worst so far was the nurse who told me that I didn’t have Asperger’s traits and insisted I must instead be depressed, have an anxiety disorder and have ADHD, all within 5 minutes of meeting me. Then she wondered why my blood pressure was through the roof when she took it a few minutes later.

    3. I’m not sure what this question means.

    4. I take advantage of the fact that it’s acceptable to lie down and close my eyes because I find that relaxing. Also, stimming liberally.

    5. No to both

    6. I’ve never disclosed to a dentist because it hasn’t felt necessary. I rely on pressure stimming to get through difficult parts of appointments. In general, I’m also very good at dissociating myself from pain and discomfort when necessary, though that seems like an unhealthy and not recommended coping strategy.

    7. I haven’t had any of the listed tests done, so I’m not familiar with the side effects or how I might respond to them.

    8. Oh yeah. I inevitably get the “call your doctor if you experience _______” side effects. I’ve had auditory hallucinations from both antibiotics and painkillers plus raging paranoia and some rare nervous system things like tremors and neuropathy from antibiotics.

    9. Have never tried naturopathy.

    10. I’m not sure I understand this question. Also, have never sought out mental health care so I probably would not be able to answer it if I did.

    1. I explained what I meant by number 3 and ten in my comment as well as some others! Hope it helps! Thanks again so much for this platform!:)
      P.S. I have also gotten the anxiety disorder thing but I know its not…Its sever anxiety in certain environments due to misreading people or sensory onslaught which is quite different from a typical anxiety disorder. I also experience OCD anxiety when life gets particularly hard but again, if I can find coping therapy it does not last long compared to an actual anxiety disorder. Its unfortunate that health professionals usually write off the person as incapable if they seem to have anxiety. They still are worth giving dignity too and listening to more.

  5. 1. Yes, since childhood. Fillings on every visit from the age of 7 or 8. No children, so I can’t comment on that. Cleanings are almost as painful as fillings, sometimes more because there’s no anaesthetic. It’s a wider sensory issue, as well. The cold water blasting my gums, the vibration or scrape of metal against enamel, the high-pitched screech of drills and polishers. The glare of the bright light in my eyes and the general discomfort of cheap plastic glasses against my nose and the sides of my head. And it’s always SO COLD in there.

    2. I’ve yet to find any allopathic medical types (other than psychologists specialising in asperger’s) who handle disclosure with sensitivity and care. It’s usually a case of disbelieving unless you can produce an official diagnosis.

    3. Errr, no.

    4. The usual high-functioning aspergirl approach – constant vigilance on appearing NT so I can get what I need (a prescription or doctor’s certificate) and get out. There’s a constant awareness of heightened discomfort, but if I keep focused on my goal, I can usually get through it unscathed. I go to pieces when there’s needles involved, though.

    5. Never experienced a freezing agent. I have a hit and miss response to anaesthetics. Some don’t hit me at all (which irritates me because they still expect me to pay for the service, even though I effectively didn’t GET it), some send me into convulsions the floor (scary for all involved), and a few magic concoctions actual do what it says on the tin (hallelujah). My dentist has notes on my file for the good, the bad and the ugly.

    6. I just appear like a normal anxious-at-the-dentist type, apparently.

    7. I will stick my head in the sand forever on most medical procedures, until I become very ill. Like a lot of autistics, my perception of health and discomfort is a bit skewed. I can switch off pain responses and am used to intermittent bouts of joint and muscle pain, skin conditions, ear/nose/throat complaints, digestive issues, etc.

    8. Yes, often. It’s a trial and error approach, and I try to keep traffic light records of safe and effective remedies.

    9. Yes! They just get on with trying to fix things. Their hit rate is maybe slightly better than allopathic doctors.

    10. I’ve had horrible experiences with depression and anxiety meds, and refuse take them anymore. But then, my allistic sister has been through the mental health meds ringer, too, so maybe it’s just a genetic predisposition. The only thing I’d say to a doctor is to stop handing out SSRIs like candy, though I get that it’s an easy fix an overworked under-resourced GP. From a vulnerable patient’s perspective, it’s easy to feel unsupported, and pressured into taking the pharmaceutical route when you really don’t want to.

    1. Yes the dentists is always so cold! And I love how you explained cleanings…exactly my experience! Also I approach number 4 and 5 like you too…in regards to your number ten I guess I did not even cover therapeutic meds in mine…I also do not react the way I should to many meds and do not take any now even though I can have horrid depression, severe anxiety and add. I manage it all through a combo of things to cope like my environment, support system, cognitive therapy, food choices, massage, naturopathy, minerals, yoga, staying in a lot and other strategies. One would not just work for me…I have to use all of these to stay healthy and on top of my issues. Its a lot of hard work. I have been pressured to take tons of antidepressants but I tried one once and it made me worse and after researching I now put my foot down and most docs around here know not to try with me. I also took adderall for ADD and it turned all my emotions off to the point of damaging. It did what it was supposed to but plus some. It was horrid. That said, I do know some friends who these meds are their lifesavers. It works differently for everyone but my approach is caution to anything I put into my body as my gut often translates it as foreign or something to fight or translates it differently. I do think its really hard to keep my therapy and health in my hands and to constantly advocate for what I need, remember what I need and fight for myself but then I remind myself what happens when I don’t. That is worse…

  6. First, a disclaimer of sorts. I was a Hospital Corpsman in the Navy for my six years of service. (almost 50 years ago) Because of that, I have always been on top of what’s new in medicine and find that I’m always curious about any procedure or test. I research all new drugs and I’m a fan of drug therapies when called for. Also, fear never enters my mind. Without fear, there is little pain to worry about.

    I can only answer a few of the questions because of my prior medical experience.

    I sought out a dentist that would use light anesthesia to allow me to ‘sleep’ while he did his work. Before that, I avoided the dentist because I hated the feeling of having my mouth wide open while the dentist poked, prodded and drilled. Pain wasn’t the issue, it was his fingers and tools. Now I sleep through the whole procedure and I enjoy going to the dentist. If only the hygienist would do the same for me…not because it hurts but I hate having the work done because of the issues I stated above.

    I suggested a diagnosis of depression to my doctor because, as an artist, I was finding it increasingly difficult to become motivated. My art career was at a standstill. He tried a few different meds on me and then I suggested Wellbutrin. That works. I paint.

  7. 1. No, my teeth are healthy and I’ve never had a filling. I know lots of NT people with terrible tooth problems. I hate the hygienist cleaning my teeth, I hate the closeness and intrusiveness of it and it always hurts. I also hate using my electric toothbrush because I can’t stand vibration, and I’m really bad at dental floss and frequently cut myself with it.

    2. I haven’t had to tell any yet but my current gp is very good and I’d be surprised if it went badly. I’m waiting for them to receive the diagnosis before talking about it.

    3. I don’t understand this question.

    4. At the doctors there isn’t much challenge. In the waiting room I usually knit to help me relax if it’s crowded.

    5. Only had this for tooth extraction as a kid and don’t remember any problems. My mother, NT, has an atypical reaction and the anaesthetic takes a very long time to work.

    6. I wouldn’t say more autistic, I’m just me, but it’s a high stress situation so my coping is reduced. When I get my teeth cleaned I continually twist my hands and fingers together and tense my feet to cope with the horrible sensations, and invariably cry but don’t ask her to stop so it is over with quicker. I haven’t told them I’m autistic and they haven’t asked.
    There are paintings on the ceiling to look at which is nice. There’s a friendly looking sea gull over the hygienists chair.

    7. I comply with required tests but haven’t had any from that list. I hate some of the regular tests but make myself do it by telling myself it’s better than a curable disease becoming incurable if it’s missed.

    8. I haven’t had a huge number of drugs but am sensitive to side effects in many I have had, and have unusual side effects from some. I used to think I didn’t get side effects but I think I just didn’t have to take many medications when I was younger.

    9. I don’t use naturopathy. I am skeptical of “alternative” medicines because there are a lot of charlatans including many who will “cure” our autism for us, probably through diet or vitamin supplements. I don’t want to sound rude and I know there are many complimentary therapies that help people a lot, it’s just best to check them out thoroughly.

    10. I don’t understand this question, but I don’t think it applies to me.

  8. “””Do you have more dental issues than your peers? Do your autistic children have more dental issues? Do cleanings hurt you more than fillings?”””

    I don’t think I have more dental issues per sé, although I have an aversion to brushing my teeth and don’t do it as often as I should; I’m sure if I did it more often, I would have far fewer. However, that’s a perfect segueway into the cleanings bit: I hate, hate, hate, hate cleanings. I put them off as long as possible and often just flatly don’t do them. Everything about them is obnoxious, from the scraping against my teeth and gums to the terrible polish stuff. There’s also a new tool that some dentists seem to use that (literally) sounds like nails on a chalkboard. It’s this awful, ear-splitting scraping sound. Honestly, I think I would be instantly loyal to any dentist that would give me novacane for cleanings, because they are so incredibly uncomfortable. Novacane is my solution to fillings; they give me enough that I am effectively distracted.

    * – * – *

    “””Do you find there are certain medical staff that are better at your autism disclosure than others (nurses better than doctors, blood test/ lab workers better than nurses, specialists better?) etc.?”””

    I haven’t noticed anything by sub-profession. Certainly some individuals have been better than others.

    The one thing I might say in exception to that is that it seems to me like generalists are better than specialists. Last week, I made a series of phone calls on behalf of a friend who is on the spectum trying to find an oral surgeon who would make an exception for a specific need. When I explained the situation to several dentists, they were very understanding and tried to refer me to oral surgeons that they beleived would be understanding. The oral surgeons, on the other hand, were uninterested and unhelpful. That event, obviously, is fresh in my mind, but it seems like a general trend.

    * – * – *

    “””Do you have a code word or phrase that helps you the most during emergency appointments?”””

    No. Someone explain to me how that works? Maybe it would be a good idea?

    * – * – *

    “””How do you manage sensory issues at the doctors?”””

    I stim, and I look at the floor (or sometimes the ceiling) a lot. That mostly solves my visual issues. My auditory issues I mostly just “power through” at this point. There is no such thing as a quiet room in a health care facility.

    * – * – *

    “””Does the anesthetic or freezing cause more pain after than not having it for fillings that do not involve the roots? Do you have unusual reactions to the freezing agents?”””

    Thankfully, no.

    * – * – *

    “””Do you find you act more or less autistic at the Dentists? Do you prefer to disclose or leave out your diagnosis at the Dentists? Is there any trick that helps you get through the appointments?”””

    I think I’m actually more autistic at the dentist’s office than the doctor’s office, but it’s hard to know for sure, as I haven’t seen a doctor (other than for an appointment for my wife) in well over a decade. The dentist I haven’t been able to as effectively dodge.

    * – * – *

    “””Do you go for the usual tests or do you wait them out longer because the side effects of said tests usually cause you more problems than the test themselves? ( e.g. colonoscopy, mammogram, gastroscopy.)”””

    I don’t do checkups or usual tests.

    * – * – *

    “””Do you have unusual side effects to anesthetics, painkillers or other medications?”””

    I’m allergic to penicillin, but I expect that’s unrelated to my autism. I’m resistant to medications generally though, so I have to constantly explain to anestheticians that they must account for this. Most of them don’t believe me and we have to do this dance where they say I should be numb and I am not numb yet. (There has been screaming in the past.)

    * – * – *

    “””Does naturopathy generally accept you and address your issues better than allopathy?”””

    I think mostly I practice ignore-it-and-hope-it-goes-away-opathy.

    * – * – *

    “””Does mental health support normally apply to you or do you find you defy the odds of symptomatic depression, anxiety etc. and need alternatives? What would you suggest to a doctor if you could in this regard?”””

    Other than needing slepping medication, I’ve mostly avoided depression issues and the like. The support of my wife and a couple of close friends who understand me has been sufficient thus far.

  9. anonymous answers:

    Q1: Yes I have more dental issues
    Q2: Nurses
    Q3: No
    Q4: Ignore
    Q5: N/A. Never have had a freezing agent applied
    Q6: More. Anxiety higher
    Q7: No
    Q8: No
    Q9: N/A have not been to a naturopath
    Q10: I am on Wellbutrin for severe clinical depression

  10. anonymous answers:

    Q1: I don’t discuss dental issues with my peers, so I don’t know. I’ve also only been to a dentist a handful of times. I do have dental problems though, partially due to never having good dental hygiene habits when I was younger — I have a hairtrigger gag reflex, and I often have to wait half an hour in the morning to brush my teeth so that I can do it without crying or throwing up in my mouth. Cleanings are painful and traumatizing for the same reason — almost anything in my mouth makes me gag, especially if I’m already upset at being in a doctor’s office. My grandma (almost everyone in my family would probably place on the autism spectrum) avoided dentists for most of her life for reasons similar to mine and has extensive dental problems.

    Q2: I do not have an official diagnosis, and I rarely go to doctors, so I don’t tell them any more than they need to know to treat my immediate concerns.

    Q3: No.

    Q4: By dissociation, enough that I can still talk but nothing seems relevant to me. Having a book in my hands at all times to fall into the second I’m left waiting helps, too, if I can focus on it.

    Q5: I don’t have experience with these.

    Q6: I haven’t been to the dentist since I was a minor so I don’t remember.

    Q7: I rarely go to doctors and only have experience with urine tests.

    Q8: I’ve only been on a very few medications (antibiotics), so I don’t know.

    Q9: I have never been to a naturopathic doctor. Rather, I practice and study herbalism, grow most of the plants, and make medicines for myself and my family. Doing so puts my medical care under my own control and makes it less scary — plus, approaching things like a science experiment is easier. Plants often work more effectively for me.

    Q10: I have never sought mental health support or diagnoses and I deal with my depression, anxiety, panic, etc. myself (some plants help). I would probably not say anything to a doctor because I don’t want to end up with anything marked on my records — I try to keep as much of that private as possible, partially for safety and partially out of my general hatred of strangers prying.

  11. * I asked most of these questions so I will also try to explain why in some of my answers and expand on them to be more specific about kind of what I was looking for:)*

    1. Yes. I brush well ( although flossing cuts and hurts me and gets stuck because my teeth are tight together) and eat a healthy diet yet I am at the dentist way more than my peers. I have had a filling every time I go and this year alone I have had 23 appointments including broken teeth, large fillings and caps.Some of this was due to my unusual reactions or issues causing more issues at the dentists and some was the dentists fault for not catching things.
    Yes my children are at the dentist all the time. They were all born with holes in their teeth as they came in. I was wondering if any other autistic children had this issue with certain teeth? Also my boys have dealt with a lot of abscess even though they brush good and eat no sugar.
    Cleanings bother all of us more than fillings because it feels more personal and the sensory onslaught kills.

    2. I find nurses ( in general) horrid at treating me with equality or my son if I disclose. The Lab/ bloodwork people have often treated my sons meltdowns with distaste UNTIL I disclose he is autistic and then they are AMAZING…so that goes the other way…I also find specialists more ignorant or know it all then most doctors and not as open to thinking about my explanations…I was just wondering if this was my specific expereince?

    Esp with nurses…when I was pregnant and in the hospital more the nurses were especially awful with me even though I did not have my diagnosis yet, they sensed I was different and treated me with more control and disdain.

    3 and 4.) I read this once in a book and was hoping people could explain it to me:) I guessed that maybe it meant a meditation phrase so I have been trying it out…Like saying in my head “This too will be over” and actually visualizing myself after the appointment out in the sunshine and holding on to that image….it has helped me. Also, a running commentary in my head about sensory things I have to do Which ties into number 4. If I have to take something like a needle pinching or the sounds that make me want to cover my ears, I will also tell myself what the sensory thing is to most others and how it is bothering me…somehow that helps. I will bring earbuds with music if allowed, sachets for scent if allowed, and wear a large ring I have with a smooth moonstone on it to rub and feel the coolness and smoothness of it when other sensations are driving me nuts…I have other coping mechanisms too but those are the ones I can think of right now…anyone have anything to add?

    5). the anesthetic or freezing DOES cause more pain after than not having it for fillings that do not involve the roots. I have had to convince the dentist a few times not to have freezing on minor teeth and I walk out of there fine…but if I have a similar filling with the freezing for hours I feel miserable, in pain and off…and do for about three days after. However, I have had a deep filling which I felt and would take the freezing with that for sure! and root canals. I tend to have a slight reaction that isn’t normal. It takes me longer to freeze so they work on me while it is not quite frozen and then I freeze an hour later to the point where it is as hard as a rock and so so so painful…it lasts longer than most people too . Just wondering if anyone else had that?

    6.) I find I control how I seem more at the dentists. I do not disclose and never have but I know they know I am different. They actually love me there and treat me a tiny bit more like an adolescent then adult but I like it. I use the same sensory tricks I do at the doctors. I wear comphy clothes too and bring my iPhone to text people prior and while the freezing takes in because it makes me panicky to not be able to feel. I also can not understand when they ask me to bite down with medium pressure…what is medium pressure?!!?? I usually bite too hard or not enough and have to do some of the stuff all over again. Sigh.

    7) I wait. All the tests I have ever had have caused me more issues than the problems I have gone in for. I think because pain is relative to me- the doctors either take it too seriously or not seriously enough. There are times I had to insist on X-rays because I had double pneumonia but I looked fine and was sent home 5 times before they discovered I was really sick. At the same time I have gut issues and the tests they sent me for were invasive, causing IBS symptoms for weeks, pain and suffering and toxicity in my body that took a year to get over as opposed to what I was actually dealing with which was food sensitivity and anxiety.Tests feel like torture to me. Literal torture because of the sensory stuff. I know any normal person hates tests but I felt that perhaps autistics felt like it was a direct invasion ( more personal than normal people) on their essence because of the way our brains are wired and our pain tolerance difference and our sensory onslaught. It feels more like I am a cow being poked and prodded and it takes a long time for me to get my dignity back and my humanness after tests. I was wondering if other felt this way?

    8.) Do you have unusual side effects to anesthetics, painkillers or other medications? YES!!! I have tried every painkiller and none of them work for me except sometimes a simply tylonal ( which I never take) Morphine makes me not breathe, fyntonal does nothing except make time pass weirdly yet I still feel everything, Kodine causes hallucinations which make me unable to deal with the sensory stuff of the illness even less, and Demeral is like alcohol to me..it takes off my inhibitions and my ability to filter sensory things…ect. I covered anesthetics above (plus when I go under I can’t breathe and need oxygen and when I wake up I am shaky and my skin crawls for 28 hours. Its awful.) Medications NEVEr work like they are supposed to for me and generally I get more of the side effects than most people. I am so sensitive to small doses and I need the doctor to prescribe way less than he would a normal person which tends to work better.

    9.)Does naturopathy generally accept you and address your issues better than allopathy? YES!!! I have had horrid success with most doctors in general but I have paid for a naturopath once every year and taken what is asked with no side effects and effective ways of healing my body. I have an excellent naturopath and I find that natural health has respected my differences and viewed my body as a WHOLE that is not treated with just one symptom but as an individual essence. the appointments run at 45 minutes and she spends tons of time with me personally seeing what will work for my specific body. My health is now in my hands and I do other things self taught in this venue to keep it that way. I used to live at the doctors so much and now I see the doctor maybe one a year or so. I will use a doctor for a broken bone or something that takes modern medicine but in general I have even gone to the doctor to get a test to tell me I had a bladder infection, then instead of antibiotics I took some invasive drops on my tummy for three days, and got re tested and my infection was gone ( I was a skeptic at first so tested her by tests at the hospital) I have done that since and every time my infection goes away without antibiotics and their damaging side effects. ( BTW I do think in SOME cases antibiotics are a life saver and still necessary) but naturopathy has changed my life and made health care pleasant because its non evasive yet still gets to the issues. Like all things there are some bad naturopaths but in general I think its a great fit for autistics and I now take my children ( we save up because it is a worthwhile cost for us…)

    10.) What I meant by this question was that typical depression does not apply to me. Nor does typical anxiety. because of autism and sensory stuff I often present in an unusual way. So they conclude I am a hypo or that I am NOT depressed because I could not possibly have that high of a depression and do so well…In therapy I do Cognitive behavioural therapy to cope with my anxiety and other people and it works really well at helping me…but I have had to explain over the years why some of his diagnostic methods or conclusions would not work on me. Luckily I have a great therapist who is intrigued and impressed by my approaches to life so over the nine years of being in that office I have sent articles (including Musings of an Aspie ones) and books I trust to help with perceptions. He has read them all and really grown in his approach with me. I guess what I am trying to say, is if Autistics can find a mental health professional who gives them dignity and respect and works more like a team approach to health will instead help with coping mechanisms for certain sensory things and not try to cure or put in a box. I am not typical and thus do not require a typical healing approach or coping approach. In fact, I get depressed immediately if the sun goes behind a cloud, but as soon as it comes out I am fine again. This is due to my sensory perception of light. my therapist believes me because i have explained this to him, and then he gives me phrases or different visualizations to apply on particularly gloomy weeks, or extra support or reminders that those weeks I may melt down more because I am being triggered by this…so lots of brainstorming together with my therapist. He says the Aspies now in his clinic are more the exceptions to his other traditional methods of treatment because most of them talk way more than other patients, explain, and are partners in their health if they feel comfortable and can keep up with many theories or even surpass some doctors in research if it is an obsession they enjoy…Not that all autistics are that way, but I find that we do not manifest depression, anxiety or OCD like NTs who have the same thing…

    * Sorry that ran on…I am passionate about better health care for all. I honestly believe if more Autistics spoke up we could slowly create change…even something as simple as medical rooms with better colours, pretty art on the wall and better textures to help us heal the sensory onslaught that also affects the body…*

    1. A 45 minute appointment where the doctor takes the whole person into account, not just the symptom? That sound wonderful!
      I’m very lucky with my gp, they take time to ask and answer questions and usually go way over the allotted time and never make me feel silly for asking anything and even ask if I have any ideas my self. It makes me feel much more valued and hopeful than the rushed through here’s a prescription method. I wonder if this is more important to autistics because of possibly needing extra time to process information and keep up with the conversation (I struggle with that), but probably everyone would benefit from it.

      I completely agree that medical and dental centres should have sensory friendly environment. So many are stuffy, painfully lit, and with the radio on. NTs who are unwell are quite likely to develop sensory sensitivities too so it would benefit everyone.

  12. 1. I had a lot of cavities and thus fillings in my early teen years. This is mostly attributable to my parents’ failure to ensure good brushing habits. By high school I’d figured out that, um, it’s gross to not brush your teeth. My daughter has no such issues for this reason. Taking care of your teeth is important in our house. After having multiple extractions and also braces, I don’t mind cleanings.

    2. I’m self-diagnosed (as are many who will answer this survey) and have never disclosed that.

    3. I don’t know what this question means.

    4. Like anywhere else. I don’t find medical appointments to be more or less difficult than, say, business meetings or discussions with my daughter’s teacher.

    5. I don’t know how to answer this question.

    6. I don’t have particular problems at the dentist, or any more than any other doctor. Again, self-diagnosed, no disclosure.

    7. I reason that the side effects of the test are better than the disease they are trying to avoid/detect so I do my screenings as prescribed. They’re miserable, but necessary.

    8. Yes, often the “very uncommon” side effects. I had a medical issue when I had my daughter. One of the drugs they gave me had the pleasant side effect of panic attacks. Unfortunately, thanks to the rest of my behavior up to that point (unrecognized aspie when having a lengthy hospitalization for high-risk pregnancy, so it was pretty bad) the attending did not believe me that this was abnormal or that I was having a reaction. I’ve learned to research a lot about meds, when not in a hospital bed.

    9. I don’t understand this question.

    10. I don’t understand this question.

    The number one problem I have with healthcare providers is that I either misunderstand the providers’ questions, provide incomplete responses, or forget pertinent information. Then I look silly and am unhelpful. I haven’t come up with a good coping strategy for this yet. It would be great if providers could give a written list of information desired in advance (especially with a new doctor, procedure, etc.) so that I could review it and think about it and have a chance to remember what I’ve forgotten.

  13. I’m just going to answer this in block, rather than question by question.

    This is a very timely questionnaire for me. I am having terrible trouble with my teeth right now and it’s been a long time coming. Part of it stems from poor oral hygiene when I was younger but there are so many other complications that I ended up having a good rant recently about my crap overall health. It never occurred to me that it could at all have some relationship to autism. Is there a link? Can someone explain this to me more, if so?

    I HATE cleanings. I have unbelievable sensitivity. Fillings are mostly fine because I am numbed up, but I recently had to have serious work done on a tooth and there was five or five different bits of metal in my mouth and incredible pressure on the tooth as it was worked on. I started to have a mini-meltdown and as soon as she could the dentist stopped work and let me have a bathroom break where I could freak out in peace. Funnily enough, once I could see the tooth in the mirror and see how bad it was I felt a lot calmer because at least I knew all this suffering was for a reason. I was so exhausted then that I began to fall asleep in the chair as the work was being finished up. I was a new patient too – the dentist and her assistant must not have known what to make of me!

    The dentist’s attitude makes all the difference for me. I don’t want to be patronized but I do need my fears soothed. Giving me a bit of time to calm down, without even saying that that’s what she was doing, was the best thing a dentist or doctor has ever done for me.

    I take it very personally when I get sick or injured. I get quite overwhelmed. It makes me feel like I’m broken, and because I have some very odd health issues, it reminds me that I’m not normal. I had an ob-gyn who, when diagnosing my very unusual hormonal condition after years of tests, actually said, ‘And you look so *normal* from the outside…’ I always felt like a bit of a freak. That just confirmed it for me, medically speaking. I was twenty-one.

    I like my medical professionals to be soothing, but since I haven’t experienced that that much, I like them to be super-efficient. That way, I can get out of the situation quickly. I just want to get better and move on. I like my allopathy (a word I wasn’t familiar with, so thanks for that). It’s not perfect, but I like the science behind all the testing, and I counteract some of the problems by being as knowledgeable as I can about myself, my conditions, and general health matters. I’ve learned to be very assertive with doctors. I go to them for their expertise but I have no problem telling them if need be that they’ve got it wrong or no, I won’t be taking that medicine for this-and-this reason. It was something I learned from going to that ob-gyn. I hated how powerless I felt in her presence, how much control she had over me with her words, but at the same time she was the only one who spotted my condition and began treating it. I had been to all sorts of other professionals, allopathic and naturopathic, and nobody figured out that there was something seriously wrong with me.

    I do have a close friend who is very knowledgeable about health and would generally take a naturopathic view to it, although more by way of prevention rather than cure. He is also the healthiest person I know. He is extremely learned and open to being wrong or taking in new information and so when I am trying to be healthier overall or deal with issues that have a lifestyle component I will go to him first, before any doctor.

    I would have said before coming to accept that I had autism (undiagnosed) that I had mental health issues. As there is a strong history of depression in my family, I thought it came solely from that. I believe now that previous bouts of depression are much more likely to have stemmed from issues surrounding my autism, which would explain why therapy didn’t really work for me in the way that I expected it to. The last therapist I had I deliberately chose because he seemed very unlikely to want to form some kind of emotional bond with me as his patient. I had an inkling that there was something ‘wrong’ with my brain, in my wiring, and I wanted a dispassionate observance of that. I didn’t want to keep blaming my mother.

    I also suffered from SAD, which has pretty much disappeared now that I live in a much sunnier climate. I still suffer from anxieties and a tendency towards catastrophic thinking, not to mention brief bouts of melancholy. However, since I know that these have a strong relationship to my autism, coupled with the unfortunate learned behaviors I picked up from having a depressive parent, I do not worry so much anymore about have a recurrence of depression. This has actually greatly helped my overall mental health.

    1. In regard to your last paragraph: Isn’t it funny (not ‘ha ha’ funny) how once we are aware that we are on the spectrum, and can read about it and increase our awareness of it and how it influences us, that awareness and understanding can take the edge off of some of the worry and anxiety? I find it amazing how profoundly explanation can affect us.

    2. 1) Dental issues – don’t think I have more than my share of dental issues, but I am nervous of the dentist and did once have a melt down at a very bossy receptionist who wouldn’t check some details with the dentist before making an appointment.

      2) Medical staff that are better at your autism disclosure – I don’t disclose as I’m not diagnosed – but I have fear of blood and needles (liable to pass out) so I have to disclose this! Really depends on the individuals – but that is what I dread – you never know if you will get someone lovely or a power-crazy sadist.

      3) Do you have a code word or phrase – I didn’t understand this question at first – but I do use yoga/meditation techniques to try to relax, and this can involve a mantra.

      4) How do you manage sensory issues at the doctors? See above.

      5) Does the anesthetic or freezing cause more pain? Sometimes.

      6) Do you find you act more or less autistic at the Dentists? I am nervous and gag/choke easily so I disclose that! Currently have a lovely dentist who I have known since we were kids and he is very gentle and patient. Having stuff to focus on, like a moving mobile on the ceiling really helps (visual stim I guess).

      7) Do you go for the usual tests? Yes I make myself – but I hate them especially gyne ones.

      8) Do you have unusual side effects to anesthetics, painkillers or other medications? Yes – I have had bad reactions to strong painkillers and anti malaria meds – pethedin, codydramol, larium, giving me hallucinations and psych problems – and addiction problems with codeine based meds generally.

      9) Does naturopathy generally accept you and address your issues better than allopathy? Don’t use much – but have good experience with osteopath for back pain vs. traditional meds and phisio.

      10) Does mental health support normally apply to you? MrsT’s comments rang very true for me – I also suffer with SAD and depression but meds and counselling not really effective – understanding possible chemical/sensory causes and accepting them is seeming like it might be more effective.

      Just want to add a more general comment about problems that I am beginning to think may be related to autism – I have had doctors tell me that I can’t have “x” as I am not in enough pain – specifically about appendicitis and being in labour! I think there are two things going on here – one is the proprioception thing about not being able to distinguish how my body feels, and secondly not being able to communicate what I do feel – emotionally or physically, to another person – I’m inclined to smile and put on a brave face – even when my appendix is about to rupture or I am 8 cm dilated!

  14. anonymous answers:

    Q1: No.
    Q2: No.
    Q3: No.
    Q4: If one comes along, I tell about it.
    Q5: Not sure, I´ve tried freezing.
    Q6: I think, I told my dentist, but nothing has changed.
    Q7: Gynecologist. It hurts.
    Q8: I may feel unable to breathe after anesthetics round shoulders/neck/back.
    I need very small dosage of everything, or I´ll overreact.
    Q9: Sometimes.
    Q10: I accept ordinary mental health support like certain meds and counselling.

  15. anonymous answers:

    Q1: I have dental issues I am scared to visit dentist
    Q2: yes it depends on their individual personality rather than their job
    Q3: calm
    Q4: shut myself off to the noise and loud radio in the waiting area
    Q5: don’t know
    Q7: I am scared I go when forced to by my symptoms
    Q8: nausea
    Q9: unsure
    Q10: don’t receive any support

  16. anonymous answers:

    Q1: My teeth are pretty healthy, but I hate going to the dentist. The polishing really hurts, but the hygienist is about as nice as you can expect them to be and they just make fun of me and call me a “baby”. I haven’t gone in years. I’m looking into cleaning kits so I can just take care of my teeth on my own and only go when I have something I can’t handle, like a cavity. I’m also sensitive to fluoride, it makes me feel bad and kills my appetite for several hours after I have some in my mouth no matter how careful I try to be and rinse it all out. I don’t brush my teeth in the mornings because that’s when my stomach is extra sensitive to everything, another thing they complain about. As expected, they complain when I turn down the fluoride treatments and they tell me I’m just being sloppy when rinsing out my mouth because obviously that’s the only way you ever get an upset stomach from fluoride.
    I’ve only ever had two fillings, and they were painless. Maybe because I was a kid and they’re nicer to kids than adults? Neither of them were my fault at least, one was from my teeth growing in funny so no brush or floss could reach that spot, and the other was because blood had gotten between a tooth and dental gear (I hate braces) and I had a cavity from that. So I think I do well with my teeth. Or so they told me.

    Q2: I’m not diagnosed. But it’s still very hard for me to find a good doctor even on normal people levels. It took me over six months and seven doctors to get them to do just one simple blood test to find out why my heart rate was rocketing to over 100+bpm without cause. I think it was because I was on Medicaid at the time, because when another relative went to the doctor over the same issue and with regular insurance, they panicked and had my relative tested after just one visit.

    Q3: Nope. They ignore me no matter what I say, no matter how blunt. I just have to cope with the after math as best I can on my own.

    Q4: I hold it in until the appointment is done and my husband lets me cry on him as long as I need. The doctors just laugh at me or ignore me when I tell them about my problems, and then do whatever they want to get me out of the way faster so they can do it all over again with the next patient.

    Q5: Thankfully I’ve never dealt with a freezing agent. My first real round with laughing gas did start making me jerk and twitch uncontrollably, so they had to turn it down. One of the few times I ever had a physician be kind.

    Q6: Do you find you act more or less autistic at the Dentists? Do you prefer to disclose or leave out your diagnosis at the Dentists? Is there any trick that helps you get through the appointments?
    I’m still new with my self-diagnosis. But back when I had braces, the only way I got through the tightening visits was to cross my arms so they couldn’t see how deeply I was burying my fingers into my ribs. Only once did I have a tear roll down my check and thankfully they didn’t notice. They laughed at me when I said it heard and told me to just take it. I always had to trim the back wires myself because they didn’t care how bloody the back of my mouth stayed. They weren’t considerate either, on two occasions they put globs of glue on my teeth so I couldn’t close my mouth. There were several times my mom wanted to put me in the hospital because I was already underweight and I was getting worse because the dentist didn’t care if I was able to eat or not. And he was our only option to go to, because rumour had it the others in the area were even worse.
    Q7: I refuse to get any of them, and honestly I’d rather die than get them. The physical pain is manageable, but nobody cares about the toll it takes on me psychologically. I’ve been molested and raped, but they say that’s no excuse to not go get naked for anybody at the drop of a hat, and I have a strong phobia of being cut on too. I still haven’t recovered from having a baby. I’ve suppressed most of it, but even venting about it now has me shaking and nearly crying. It would not have been that bad if everybody and Medicaid had just listened to me and let me get a midwife to limit the trauma as much as possible. (Contractions have nothing over seven different women shoving their whole hand into you every fifteen minutes.) The doctor did everything wrong! Short of a c-section and the baby having trouble, everything I was afraid would happen did. But nobody listened or cared. The idiot nurse that came to visit me a week after only checked for depression. I was only 4 of the 5 needed for depression on a list of 10, but I looked at her paper and saw I was 9 of 10 for the LIST on PTSD. Naturally, since a doctor didn’t say that, I don’t have PTSD, and I’m just trying to get attention. It doesn’t matter I spent about six months cowering in the corner of the shower and crying because I was afraid since I was naked somebody was about to hurt me again, it doesn’t matter I freeze when the subject of… I can’t even type it… comes up, it doesn’t matter how scared and angry and violent I’ve felt, or the nightmares I’ve had, because obviously I’m just feeling all this for the attention. I had a social worker come harass me at the hospital because once I had reached my breaking point and told the nurse that my clothes were to stay on, the damn social worker accused me of being a child abuser. Over not getting naked!! Not because I was cruel to the newborn, I’ve had tons of compliments before and after of how I was a great mother, but I’m a child abuser because I don’t get naked every time somebody wants me to regardless of how dangerous it will actually make it for me and the baby in the longterm because of what it does to me emotionally. I really hate our system. I’m sorry if this isn’t the appropriate field to put this, feel free to dock out all but the first sentence if you need to. But I’d really rather die than go through any of that again by making the mistake of trusting a facility to do their damn job right.

    Q8: I once had a stout painkiller stop working after a week of taking it as prescribed. So I guess painkillers don’t work well on me, and I’m not willing to risk my liver to take higher dosages.

    Q9: I don’t know of a natural person nearby, but I would love to find one if I could. Surely they wouldn’t be as bad as everything else I’ve dealt with…

    Q10: What mental health support? I tried three different times to get a counselor to help me with the simple act of a neutral party to talk to. That’s all they had to do. No prescriptions, no referrals, just listen. This was right after my child was born. The first two stopped talking to me after one meeting without telling me why, and the third lasted about a year before he started calling me “stupid” and “stubborn idiot”, telling me to do these dangerous things that were just ridiculous (like assaulting my husband), and started making up these wild accusations of how my child never went to the doctor based on the fact I dislike doctors and he ignored the paperwork showing where my child had not only been to all his appointments, gotten all his shots, but even had an additional test done I felt necessary to address an issue. I nearly had to take legal action because he was also threatening to kill some of my family and in-laws. (For the record, the police don’t file reports on death threats. You are legally sanctioned to say and threaten whoever and however you want.) After all I’ve been through, I’m afraid to go get officially tested for autism (at least before my child is an adult) because knowing my luck I’ll find another idiot who’ll use autism as an excuse to finally take my child away, despite how much the pediatrician, friends, and family brag on how good we are as parents and how our child has one of the best lives a kid could get. If you’ve got a good counselor or therapist or doctor, especially if you’re poor and/or on Medicaid, HANG ON TO THEM. Because they are rarer than Amur leopards.

    I’d like to apologize again if all this is too inappropriate. I’m just so angry! I want to tell somebody everything at least once, but I’m always told not to because “you’ll discourage somebody from going to the doctor” and “you’re just over reacting”. (My mom has always been the only person I can talk to, but there are somethings I just can’t talk to her about because I know she’d be so upset knowing certain things have happened to me. There’s nothing that can be done about it, and I don’t want to cause her that pain.) Actually… Please don’t post any of my submission on the survey. Just let me have the comfort of believing that for once, somebody read all of it, and there’s a chance they might believe me and not call me a bitch or idiot or something. At this stage, I’m honestly too scared to find out otherwise and I can’t handle being ignored or laughed at over all this again. Maybe someday, but today I just need a silent ear. And you have my deepest gratitude for it.

    1. I feel very angry on your behalf. It makes me angry that Medicaid doesn’t cover midwifery. In the part of the world where I live midwifery is covered through our universal healthcare system and even though my husband and I were very low income at the time that our children were born I was able to have a midwife and have both of my children at home. I’m terrified of hospitals (my mum was a registered nurse and my dad was a paramedic. there is such a thing as too much information) and didn’t feel like I could go to a hospital to give birth but my low income didn’t prevent me from planning for the kind of birth I felt was right for me.

      That is what you should have had. It is wrong to deny that kind of care to women and leave them to a system that they *know* is wrong for them and won’t care for them properly.

      I feel very angry on your behalf.

      I will also say that I have heard awful stories about American hospitals and the high rate of unnecessary interventions used for women in labour at those hospitals. If memory serves US hospitals have some of the highest rates of C-sections (don’t quote me it’s been a few years since I last looked at the stats. This was a special interest when my boys were small).

      I hope that you and your baby are doing well despite everything.

      You are not a bitch or an idiot. The fact that you knew from the start that you would be better off in the care of a midwife clearly supports that line of thought.

    2. You’re so not an idiot. You’ve got both my silent ears and I really feel for you. Sending some large positive vibes in the hope that they make a difference. Remember – just because some people treat you like crap doesn’t mean that you’re crap. It means that they’re crappy people and you were unlucky enough to be in their path.

  17. anonymous answers:

    Q1: I have lots of fillings. Cleaning is very difficult due to the anxiety. The sounds and vibration are so hard.

    Q2: I am not sure. I have not done a lot of disclose, but I have had a lot to do with those medical personal. And there are going to be a few who are excellent. Some who are rude and horrid, and others who just don’t get it, but don’t really mean any harm.

    Q3: No, I don’t know what this is.

    Q4: I never go unless it is one of my best days. it is not the best place to have things go wrong, or panic. I sit farthest away from everyone in the room, and away from the music speakers. I am having trouble returning due to anxiety, so I am going to talk to my doctor next time I am in, and see about sedatives.

    Q5: No, so far there has not been trouble with that.

    Q6: It is just getting harder and harder. I would say more autistic.

    Q7: I go for the usual tests, but wait them out.

    Q8: I have trouble with high doses of all medications. Usually the only pain med is acetaminophen.

    Q9: I can afford neither of these. No experience with either.

    Q10: I would suggest bi weekly appointments with a therapist trained in dealing with aspergers. Art therapy classes.. Massage weekly and/or physio. Nutrition supports, education and lab testing to confirm all needs are met. Well I guess this list would get long. I would also suggest so much more training for family doctors, in this area. And specially trained staff.

  18. anonymous answers:

    Q1: I do have dental issues. When I was a child, my mom tried to take me to the dentist, but I wouldn’t let them touch me. When I was in junior high and they could get me to go to the dentist, I had many cavities and at least one root canal. I haven’t been to the dentist for years now (I am 51), even during times when my health insurance covered dental care. The last time, I had a tooth pulled that had absessed before. Being bulimic doesn’t help. I have rotten and broken teeth.

    Q2: I like my doctor very much. He has always been gentle and kind to me. He has known and been my doctor for about 10 years. Last year, I was diagnosed with ASD and I told him about it. Didn’t seem to make a big difference to him. I do find that certain medical staff and therapists are better, like some, even if they are not familiar with autistic people, they will listen and work with requested accomodations.

    Q3: No. I did make a disclosure card, though I have not used it.

    Q4: I get very anxious. I do not handle it very well. Since my doctor is so kind, I think he would meet requests if they would be helpful to calm me.

    Q5: I am not aware of this.

    Q6: I have never disclosed my diagnosis to the dentist. Then again, I haven’t been to a dentist since I received my diagnosis.

    Q7: I avoid those kind of tests. I have never had a mammogram, even though I am 51 and doctors have encouraged me to get one.

    Q8: Not that I am aware of.

    Q9: I haven’t worked enough with naturapaths to know.

    Q10: I’ve had many mental health diagnosis (some I think accurate, some not): depression, anxiety, eating disorders, borderline, bipolar, dissociative disorder. I wish more hospitals and mental health providers were more accomodating to people with autism.

  19. 1. Do you have more dental issues than your peers? Do your autistic children have more dental issues? Do cleanings hurt you more than fillings?

    The only dental issues I’ve had as an adult is broken teeth (due to teeth grinding, my dentist has suggested), plus I’ve had my wisdom teeth pulled out.

    As a kid, I’ve had “quite many” (not sure how many) teeth pulled out due to irregular teeth + crowding and worn braces, and I had a few fillings in my milk-teeth.

    So I suppose my answer is “no.”

    2. Do you find there are certain medical staff that are better at your autism disclosure than others (nurses better than doctors, blood test/ lab workers better than nurses, specialists better?) ect?

    I haven’t disclosed to medical staff and won’t, apart from perhaps specific sensory issues that are specifically relevant in the situation, should I come in such a situation where it is relevant.

    Exceptions: my GP knows about it because he wrote the referral.

    Also: I disclosed Asperger’s to a crew member and an on-board doctor when I was having severe panic attacks and was extremely unwell for many hours on board a very long flight some months ago. The crew were quite worried, and I first explained my prior flight issues (it is normal for me to have minor, unnoticeable panic attacks during flights) and context (going home for a funeral, practical problems leading up to the trip, sensory overload and disorientation in airports et.c.), then to make them understand better explained that I have Sensory Processing Disorder, and eventually said that the full story is that I have Asperger’s, and that SPD is a part of that. When I said “Asperger’s”, the crew member who had taken charge of the problem (me) immediately seemed to understand, relaxed and was very helpful. The doctor then concluded that my illness and anxiety issues was caused by mental issues, as opposed to a medical emergency such as e.g. a heart attack. That helped them to stop being nervous about me, and it helped me to feel better understood, so it was very helpful in that situation to have that explanation, and they seemed to understand it immediately.

    3. Do you have a code word or phrase that helps you the most during emergency appointments?

    No, and I don’t need it. I also haven’t had any emergency appointments except a safety check-up in an airport related to the flight incident described above. I tend to be calm & cool headed in most emergency-like situations, so I would expect that to be the case if I had an emergency appointment.

    4. How do you manage sensory issues at the doctors?

    I don’t have any specific sensory issues at doctors’, except in the waiting room where I wear ear plugs. I usually wait until a moment when the doctor is not looking to discretely sneak them out (they are not noticeable in the ears) so I can better hear what he says:-)

    5. Does the anesthetic or freezing cause more pain after than not having it for fillings that do not involve the roots? Do you have unusual reactions to the freezing agents?

    It is not a situation I am familiar with.

    I hate the sensation of local anesthetics though. As a kid, the few times I did get fillings, I chose to get (some of?) them without anesthetics after I had tried it, because the numb sensation was more uncomfortable than the pain was painful in regard to fillings.

    6. Do you find you act more or less autistic at the Dentists? Do you prefer to disclose or leave out your diagnosis at the Dentists? Is there any trick that helps you get through the appointments?

    I’m more anxious at the dentist:-) My trick is to zone out and be very passive until it is done. I also tend to clench my fists hard and startle very easily with the weird sensations of the instruments. I visit the dentist rarely and don’t do routine checks. For example now, I have had a broken back teeth for almost a year and since it isn’t acutely problematic (no infection or anything), I’ll probably keep delaying the repair…

    I have not, and won’t disclose autism at the dentist though, he has no background for knowing anything about autism.

    7. Do you go for the usual tests or do you wait them out longer because the side effects of said tests usually cause you more problems than the test themselves? ( e.g. colonoscopy, mammogram, gastroscopy.)

    What usual tests? I don’t usually go to any tests.

    I do have big problems with a certain type of examination I’m supposed to do, and am avoiding on an ongoing basis due to its discomfort, cost, risk, anxiety et.c. because it has to be done under full anesthetics in my case due to unusual pain issues whereas normally it is just a routine check-up not done with any sort of anesthetics at all.

    8. Do you have unusual side effects to anesthetics, painkillers or other medications?

    No.

    9. Does naturopathy generally accept you and address your issues better than allopathy?

    I like the holistic element of many naturopathic therapies, the acknowledgement that mind & body is an integrated system, and the physical/sensory elements that many of them offer.

    What I don’t like is the religious-like, airy theories that they are often founded on or justified with, the fantastic claims, the pseudo-statistics used to justify the claims and the pseudoscientific theories that often underlie these therapies.

    When that is said, I have tried alternative therapies that had a positive effect on me (both provided by non-professional enthusiasts who had done some courses) and which I feel worked on me.

    The one that works best for me is reflexology. I’m very responsive to foot and hand massage, and some points are more responsive than others. For example, when certain points on my big toes are pressured, I feel it in my head, sometimes almost like a kind of currents, and it triggers or intensifies images and intense relaxation. That doesn’t mean I necessarily believe in the theories behind reflexology, but the techniques do have a strong effect on me that I can physically feel, and which have in some cases triggered instant overheating & sweating or other immediate physical reactions. I’m not sure if I can tell the difference between reflexology and good foot or hand massage though, but I’m also not sure if it matters what the name is.

    Another therapy I have experienced that worked, is what’s known as “Tapping” or EFT. It is my aunt’s latest passion (my aunt is an alternative therapies enthusiastic who also has a Healer education, whatever that is) and she gave me a free treatment session to help me with my flight issues a day before I had to fly back to Australia from Denmark.

    Her treatment was instantly calming, and by repeating the touch sequences during the flight home, I could regain the calming, grounded sensation and it helped me control the constantly looming panic. I used other strategies in conjunction with it and just barely managed to escape incidents/loosing control, but it definitely had a helpful effect.

    I was happy, but not surprised, that it worked on me, since most treatments that involve physical elements do (touch, pressure, movement, rhythm, repetitions et.c)

    That said, my aunt made numerous fantastic claims about the effectiveness of the therapies which were obviously parroted from somewhere else, she could refer no credible evidence at all and as soon as I asked into the “stats” she poured out, it was clear that it was just numbers that she had memorised and that she had no basic understanding of how statistics works.

    10. Does mental health support normally apply to you or do you find you defy the odds of symptomatic depression, anxiety etc. and need alternatives? What would you suggest to a doctor if you could in this regard?

    I have ongoing mental health issues (depression, occasional anxiety issues, confusion, getting my mind very stuck on things et.c). I have tried psychological therapy several times, some brief others regularly through a period of time. Generally, talk therapy feels awkward and often surreal/disconnected (not sure how to explain it).

    In my first therapy when I was in my late teens, I barely talked at all, but it was important to me anyway as a sort of structure that maintained a sense of hope for my life. The therapist soon put me in a group instead of individual therapy since I didn’t talk. I didn’t talk or blend in in the group either, but did learn from listening to the other 7 members of the group from the sideline. However, the way that first therapy was ended contributed to triggering a severe mental health crisis in my early twenties (severe panic attacks, depressions et.c) that eventually landed me in a mental hospital for the first time not long after, so the net outcome of that therapy was destructive despite some of the positive effects / useful social insights from observations in the group, which are still a useful part of my mental “social database”.

    In later therapies (pretty much mandatory in the mental hospital), as my social skills improved I gradually learned to do the talk therapy situation better – talk more, analyse my psychological problems verbally – sound like I was self-insightful, but my ability to connect emotionally/socially with the therapist and myself in a talk therapy situation was sporadic. Generally, in most talk therapy sessions I felt that what I said was understood as something else than what I meant, then I tried to pour more words on it and it got more complicated but not less misunderstood, but somehow the volume of words was seen as a positive sign, as if more words = better (it is not). That is the problem with talk therapy in a nutshell, I think.

    I had a good psychiatrist in my twenties for several years (although I eventually saw him only sporadically as I moved on). He was a great help, sort of an anchor through a very difficult time. I’m not sure whether he actually understood my personality, but he listened, related, cared and was someone I could trust through a long period of my life where all other relationships were either confusing and unstable (family) or non-existing (friends) and I wasn’t able to achieve a stable, integrated life situation. So I’m forever grateful for him.

    In the last few years I was in a CBT-like therapy that was quite helpful in developing problem solving frameworks, focussing mostly on executive function and sensory issues and similar specific problems, and I also felt quite well understood, it wasn’t nearly as stressing as previous therapies and I liked the therapist (that is where I got the Asperger’s diagnosis). I still had my usual talk therapy connection issues, but also had good times with it. However, the therapy stopped in a sudden, abrupt, unannounced way, without giving time to prepare mentally or process it in the context, and left ambiguities open to speculate about (which I of course did excessively and compulsively, being me… ) It has had a shock impact afterwards that has been and is very destructive, especially since it was neither the first nor the last shock this year. I have concluded that I better stay away from that kind of set-up completely in the future – psychological therapy – and try to therapy myself in other ways where I don’t depend on someone else’s structure. (I’ve also had difficulties with changed & uncertain appointment dates et.c… Seems I get way too winded up about it in general, and better not go into such types of structures in the first place).

    What would you suggest to a doctor if you could in this regard?

    I have a lovely GP. I don’t have any suggestions to make to him, but he offered I could just come in and talk with him if I needed it, which was a lovely thing to say and helped even though I didn’t take up the offer.

  20. anonymous answers:

    Q1: I can’t visit the dentist – I don’t know about peers – I don’t have any friends.
    Q2: Nurses listen – care – but I have only seen them for blood tests. Doctors do not listen / care etc.
    Q3: Um help?
    Q4: HBadly!
    Q5: Don’t know – too scared to go to the dentist – due to emotional pain caused by others – not dentist.
    Q6: I just cannot go.
    Q7: I don’t have any doctors blame my various – numerous scary physical symptoms on anxiety – they said they were panic attacks – before my diagnosis – they were not! I know when I am having a panic attack!
    Q8: I do not know I just took mebeverine for a month – IT WAS HELL! THAT DRUG IS BAD!
    Q9: I have no idea – I haven’t heard of either of those.
    Q10: There is no support here! I just need a decent friend.

  21. anonymous answers:

    Q1: I dont know if I have more dental issues, but my teeth are not great.
    Q2: No
    Q3: No
    Q4: I don’t. Our surgery is horrible, dark, small, noisy and too hot. I just try to avoid going as much as possible!
    Q5: No
    Q6: I try to act less autistic but I always end up having a bit of a meltdown and crying. Just can’t cope with the fear and the sensations in my mouth. Utter misery.
    Q7: I pretty much never go for tests. Too traumatic.
    Q8: No.
    Q10: I don’t get any mental health support.

  22. 1. Do you have more dental issues than your peers? Do your autistic children have more dental issues? Do cleanings hurt you more than fillings?
    I went through a period of not going to the dentist for 5 years (having had a minor panic attack at the previous practice I went to – in the waiting room waiting for the local anaesthetic to kick in before a filling) and only found a new dentist because I had toothache (broken tooth and decay needing root canal – oh joy) and discovered that I needed loads of fillings. But I’ve been good about going since then (found a nice gentle dentist that I trust) and my teeth have been fine. I don’t mind having fillings done though I’m not keen on the injections – it freaks me out if my mouth is too numb. But I don’t enjoy having my teeth cleaned – that can be really uncomfortable and was last time (so needed to stim). I don’t have kids but if anyone is interested my eldest cat has had 5 teeth out now and will no doubt need more in future – luckily he inhales his food so I’m sure he’ll manage just fine even if he loses them all!
    2. Do you find there are certain medical staff that are better at your autism disclosure than others (nurses better than doctors, blood test/ lab workers better than nurses, specialists better?) ect?
    I’ve not disclosed to my dentist yet (waiting for (hopefully) a formal confirmation) and there are no other medical staff that I see.
    3. Do you have a code word or phrase that helps you the most during emergency appointments?
    I’m not entirely sure what this means but equally I’ve not had emergency appointments.
    4. How do you manage sensory issues at the doctors?
    I rarely go to the doctors – only if desperate (or wanting a referral for Asperger’s!). But I did stim when I went last. I hate waiting rooms. I hate doctors.
    5. Does the anesthetic or freezing cause more pain after than not having it for fillings that do not involve the roots? Do you have unusual reactions to the freezing agents?
    No I don’t think so. For small fillings I’d rather not have injections – it’s not that painful and I’d rather have a bit of pain than an injection.
    6. Do you find you act more or less autistic at the Dentists? Do you prefer to disclose or leave out your diagnosis at the Dentists? Is there any trick that helps you get through the appointments?
    I stim in the waiting room. And that was one of the first stims I noticed. I doubt the dentist notices my Aspieness because I’ve not needed (so far) to stim when I’m having check-ups and she’s very calming. And because she talks fairly slowly (it’s not hurried and she explains everything clearly) I can have a conversation with her (basic admittedly but not bad) and make decisions without feeling confused. I had to see another dentist a while ago because my tooth fell apart (the crown fell off) and he rattled through my options so fast that my mind was spinning and I felt stressed. I will disclose next time they need me to fill in their health questionnaire. I needed to stim badly on my last cleaning and I was so tense – I’m sure it must have been obvious but the hygienist didn’t comment. I get through it by telling myself it’s x amount of time and it will be over.
    My dentist has a room set aside for people to relax in afterwards if they’re feeling stressed (though I’m happy as Larry afterwards and practically skipping out of the place!)
    7. Do you go for the usual tests or do you wait them out longer because the side effects of said tests usually cause you more problems than the test themselves? ( e.g. colonoscopy, mammogram, gastroscopy.)
    I don’t have tests. I only go to the doctor’s if I’m ill (like properly ill) or depressed (not for ages). I ignore reminders for smear tests (the reminder gets me feeling stressed!) and I can’t see myself turning up for anything else.
    8. Do you have unusual side effects to anesthetics, painkillers or other medications?
    I rarely take painkillers and they don’t actually seem to make any difference. The last time I had a general anaesthetic I had really weird dreams but that’s potentially normal. The first lot of anti-depressants I took were great – I was so happy you could have told me the world was ending and I‘d still have been smiling! But after that they didn’t seem to make any difference.
    9. Does naturopathy generally accept you and address your issues better than allopathy?
    I don’t know what allopathy is and I don’t do naturopathy. I prefer ignorotherapy too!
    10. Does mental health support normally apply to you or do you find you defy the odds of symptomatic depression, anxiety etc. and need alternatives? What would you suggest to a doctor if you could in this regard?
    Anti-depressants don’t seem to make much difference (after the first lot) but I think they’re a good idea for some people to help stabilise moods enough to try talking it out. I’ve had various lots of counselling but I’m not so good at putting issues into words so I never really manage to address issues properly. I kind of just figure things out on my own these days and do my best. Having my dog & cats to look after (and to look after me) has helped a lot. They give me something to focus on and lots of unconditional love which I really needed. Having said that I do struggle more with my OCD now because I worry about something happening to them if I’m not here!

  23. anonymous answers:

    Q1: I grind my teeth a lot. When I had my wisdom teeth out I kept getting infections for months after because they wern’t healing well. I was taking care of them but it just kept happening.
    Q2: Not particularly
    Q3: Not with appointment but in rez we have security guards and a few that I trust know that I am in panic mode if I mention having a tea party and they then can help me calm down.
    Q4: Headphones with music, baggy sweater with a hood and a book.
    Q5: freezing isn’t a problem most of the time.
    Q6: I don’t like to be touched. The dentist dosn’t help because they have to touch my mouth and face. When I was younger I would bite now I just make sounds of displeasure at them. They think its cute.
    Q7: O.o I havn’t had these tests yet.
    Q8: they make the world sorta numb

  24. 1. No, no, and no. I’m lucky like that.
    2. N/A. I don’t disclose it.
    3. No. I do badly with emergencies.
    4. Go to doctors whose offices aren’t horrible.
    5. No, and compulsive chewing/poking/prodding of the numbed area so I know it’s still there.
    6. More, leave it out, and not really.
    7. I avoid pap tests because they’re very uncomfortable, but I keep up with the rest because I like to breathe (I have asthma, so.)
    8. Yes. I get status asthmaticus to inhaled anaesthetics. I also am really sensitive to sedatives and anything with sedative side-effects.
    9. HAHAHA HELL NO. Naturopathy types tend to be all “diet and drink this magic water and that will cure your bronchospasm and if it doesn’t you’re not doing it right.”
    10. Talk therapy doesn’t help me much. I’d advise allowing AAC.

  25. 1. I have more dental issues than my peers, not sure it’s related to autism. My sister, mom, and maternal grandmother all have weak and sensitive teeth.
    2. N/A currently in process of getting diagnosis.
    3. No, never thought about this.
    4. Music and a book or if the lights are a problem, just an audiobook. Dr. office smells don’t bother me much. During the interaction part of the appointment, it helps to know that I have the music/audiobook and can go back to it after.
    5. No… though I’ve never had freezing. I suspect freezing might cause more pain than a lack of anaesthesia, as my teeth tend to be more sensitive to cold than to heat. But I’ve often needed more anaesthetic than originally given. The worst time I needed more something around 5 times (also because they were filling multiple teeth and it wore off) and they had to anaesthetise a larger cluster of nerves than they originally had.
    6. Haven’t been to the dentists in a few years, so I don’t remember.
    7. Not old enough for these, but I tend to avoid visits because I hate making appointments.
    8. Not that I know of… the anaesthetic dentists use may be less effective, and the painkiller I got for having my wisdom teeth out just made me nauseated.
    9. Don’t know; never explored it.
    10. The only time I’ve seen mental health professionals, I was a minor so my parents were involved in the appointments, and that didn’t work out well, as their ideas of what happens don’t really match up with mine.

  26. anonymous answers:

    Q1: Despite being bad at brushing my teeth I had less dental issues than my peers up until sixth form. Now I don’t know the comparison but my teeth are in surprisingly good condition filling wise. My teeth are quite crooked in my mouth and I have a wisdom tooth coming through that doesn’t seem to cause me any pain. I have more problems with the muscles around my jaw being painful. I have fibromyalgia so need more anaesthetic than most for fillings but I still find cleanings to be far less manageable than even the first two fillings I had when they didn’t know the anaesthetic wasn’t working as well.

    Q2: I have not had much experience with this as I was only diagnosed this year. I have found that my personal doctor has been brilliant although he often says he needs more knowledge about ASDs. Other doctors I have had have often appeared to believe me to be overstating my problems when I am actually understating them. I had to go to A&E a few years ago for an injured ankle and felt as though I didn’t do a good enough job keeping my ankle up so answered the questions about my behaviour more negatively. As a result they only checked my achilles tendon but my ankle was bad for months afterwards. Most of my health workers (therapist, physiotherapist, dentist) have been much better with me after I explained to them that I have autism or anxiety (depending on which behaviours are acting up at the time), they then understand more about my behaviour so can ignore it or adjust their actions accordingly. I have more difficulty with receptionists. Often they are confused by my needs and actions and although many try to understand, some are better than others and having to deal with them often stresses me out.
    Q3: no, my doctor, physio, and dentist have all responded to my physical communication in the past so we have never thought to use a code word.

    Q4: I often walk up and down the corridors rather than sitting in the waiting room, or I will sit in the nurses waiting area which is often emptier. I try to read the posters and leaflets but I have read most of them already so they don’t work very well, so I end up staring at the security doors and trying to decide if I should close the padlock. Inside the doctor’s office I tend to look between certain objects and my doctor notices if something distracts me so he will ask about it and I will often comment on changes he has made which then helps me to move away from them.

    Q5: I have never not had anaesthetic agents for fillings but I know that if I don’t have enough I find the filling itself hurts a lot. Afterwards my mouth always feels weird and can ache a bit on the side they did.

    Q6: At dentists I rarely want to be left alone and will stare at the ceiling just above the television screen rather than the intensity of the moving picture. I also go more silent. Without analysing it I’d say I might go slightly less autistic – my focus moves to a more manageable level and it’s normal for me not to want to talk to the dentist and to be interested in their tools. Looking at it though my behaviours do increase, it just isn’t as distressing as most situations that increase my autistic tendencies.

    Q7: I mostly have only had blood tests but I know that will often avoid making appointments for a long time because of the problems I expect to have.

    Q8: I have fibromyalgia as well as asperger’s syndrome so that affects this somewhat.
    Local anaesthetics don’t seem to be as effective on me as they are on other people. Often painkillers were never very effective for me or made me feel ill so I would avoid taking them. A few years ago I had a pain flare up from my fibromyalgia. Since then taking painkillers actually increases my pain for hours but may decrease the pain in the worst area for about 20 minutes. Movelat cream seems to work so I suspect this is a response to the core temperature drop these drugs cause. I find that my blue inhaler which is supposed to be used to open airways and stop asthma attacks often make me more likely to have an attack when I use them. I often find that chamomile tea wakes me up rather than sending me to sleep. I recently met someone else who had this effect and they also had the same reaction to painkillers as I do. I was recommended wild lettuce tea for sleep (irregularly) which does help to make my sleep deeper but I often find myself waking up despite it and being extremely coherent which I am not sure is a normal reaction.

    Q9: I have found that regular doses of valerian tea works far better and more consistently than my anxiety medication and reduces my pain significantly. I also find that zopiclone doesn’t tend to induce sleep (although I have learnt that that is partly because my brain chooses not to switch off so the hypnotic state doesn’t work so well) .Otherwise I have little experience of comparing the two.

    Q10: I have received mental health support but I have also had a psychologist who believed that I was not depressed simply because I didn’t show it and had poor language skills on that day. Although CBT works to a certain extent with me I find that I need someone to keep on top of it otherwise it just isn’t effective. If I am doing it on my own my brain doesn’t believe me. I also found recently that rather than trying to break the thought cycle (an idea that always irritates me) it works far better for me just to switch the cycle by finding an obsession I can focus on. I always felt that the cycle wasn’t really there for me in the way that was described, I felt its existence but it was never the main reason for my feelings or behaviours and it was often a tiny thing that was easy to stop but stopping it didn’t do much else, it just put a thought in my brain that felt fake so I’d have to sit on it for a while trying to believe it. Although my medication stops the extremes of my anxiety it does not stop the entire physical response which is tremendously uncomfortable and hard to control in other ways so I wish that they would give me something more appropriate for a fight/flight response rather than generic medication designed to affect moods. If the fight or flight response wasn’t there I would find it much easier to control my anxiety and have found that CBT does work for those attacks that weren’t so physical. If I could I would suggest that a doctor ask regularly how a person feels, not just in relation to their previous feelings but also also on a general physical adrenaline level. I feel that my drugs are wrong but I cannot explain why and because my anxiety is being controlled to a certain extent there is seen to be no reason to try to find out if something might be more suitable. I would also suggest that doctors look at what our general behaviour is likely to be. If you are trying to treat mental health using cognitive behaviour you need to know what you are aiming for, so rather than telling the person to stop the cyclic thought process that may have always been their way of thinking, suggest that they put something else into the process so the cycle becomes about something else. I would also ask the doctor to realise that as someone on the autistic spectrum I will generally be honest with you, may struggle to communicate or understand my feelings, and may come to you looking as happy as ever because I have learnt to put on a front. When trying to get help from my current doctors for my mental health I was required to see a psychologist who repeatedly interrupted me when I was trying to explain things and told me he didn’t believe me or thought I was wrong. This is in no way helpful and his later comment to my parents that he thought I was acting up was completely incorrect.

  27. anonymous answers:

    Q1: No. Thankfully I have been blessed with a strong genetic health in my teeth. I’m very bad at dental care but I have few problems. My husband is amazing with his dental care, spending about 30 minutes throughout the day cleaning his teeth, and he has horrible dental issues. I don’t get it. The dentist says he doesn’t do a good enough job. I get a pass with a congratulations on doing well. It makes me wonder what they are talking about since I put so little care into my teeth.

    Cleanings are hard. My mouth has to be locked open, I have to breathe through my nose, I have to not drown, I have hear the scraping and feel it in stereo, and I have to not mind them jabbing my gums and making them bleed. I usually cross my feet and clench my butt when they are going something really annoying.
    Q2: I have never disclosed.
    Q3: No.
    Q4: I bring a list to help me focus. I also pre-practice what I’m going to say so it doesn’t get forgotten.
    Q5: Never used freezing.
    Q6: Less. Never disclosed.
    Q7: I do it right away so I don’t chicken out.
    Q8: Yes. Codein makes me hyper and gives me insomnia. Morphine makes me sick.
    Q9: I don’t know.
    Q10: I don’t know.

  28. anonymous answers:

    Q1: Yes my mouth is full of fillings and replacement teeth. I dont have kids. Yes I try to take pain killers before I go for a clean and polish.

    Q2: yes as with anyone else, some people find us less threatening and seem to ‘naturally’ like us more than other people.

    Q3: nope. other than my full name. I am usually called a shortened versiion of my name, but when I hear my fll name its sort of wakes me up into a particular frame of mind where I knw that I have to be careful and attentive.

    Q4: blood samples are difficult; I make a joke out of my nervousness.

    Q5: its all awful. sometimes I have a valium.

    Q6: I try to remain relaxed. I have HFA so its not as difficult as for some people….

    Q7: Yes! It takes me years to get the arrangements and appointments sorted out! I have no support with it and I find it very very difficult to arrange with the appointment staff. They have very strict limits on when they can make appointments so they expect me to phone up at a particular time on a particular day to make an appointment. But I cant predict when I will be able to go through the huge stress of making that appointment. so I miss it . again and again.. for years.

    Q8: I dont think so. Its hard to know whats usual.

    Q9: sometimes in some ways, yes..

    Q10: fresh air and relaxation is critical to my mental health..

  29. anonymous answers:

    Q1: I have more dental issues, but I’m not sure how that’s related to aspergers, honestly. Yes, my son has more issues, and I believe it is because he avoids brushing because of the tactile offensiveness. I just got fillings this summer (twice, as the first dentist’s work had to be redone by a better dentist). I now have “restless gums” – like restless legs syndrome. I hope it’s just temporary due to slow healing in the nerves.

    Q2: Nope. None of them are educated.

    Q3: No, not a code word, but I found that people don’t take my pain seriously because my outward response is subtle. It’d be nice to have a magic button for really getting my point across. I was in active labor for 3 days, my water broken the entire time because the nurses didn’t believe I was really experiencing what I was claiming, even though this was my second child. Turns out he had a very large head and was facing the wrong way, and my body kept reaching the intense stage and then backing off, waiting for him to turn. He finally just barreled his way out the wrong way. The nurse was still arguing that I wasn’t in real labor an hour before he was born.

    Q4: I shut down, mostly. Retreat mentally.

    Q5: Topical anesthetics are hit and miss for me. They don’t block pain as much as make my nerves buzz while I still feel the majority of the work. After pain was excruciating and long-lasting after my first fillings, but the second time around was better.

    Q6: I don’t bother disclosing. I found a highly precise and incredibly careful dentist and I stick with her. I disconnect mentally when it gets overwhelming.
    Q7: I avoid them as much as possible. Haven’t been for a well visit in 9 years.

    Q8: I respond to some drugs more quickly than is expected, some anesthetics don’t work correctly on me, some drugs work in an opposite
    way than expected.

    Q9: Yes.

    Q10: Depression is a part of my regular life experience. Modern medicine seeks answers to symptoms, not causes, so frustrating. There is no good treatment yet for me. I would suggest that it is okay for a doctor to admit he/she doesn’t have the answers. I would suggest they listen carefully, as most people have a front they put up, and it takes a little time to get to what is really wrong, even physically.

  30. anonymous answers:

    Q1: I don’t think I have more necessarily, because I do see the dentist regularly (due to lots of problems of dental work in my father, who also has autistic traits). However I do seem to get phases of tons of cavities at once.

    Q2: I have never disclosed at the dentist and rarely at doctors offices. I have other medical conditions which I already have to explain in detail because other people haven’t heard of them, and so I already worry that I come off as a bit of a hypochondriac, so I don’t usually mention asperger’s unless there’s a checkbox for it on the forms. (Plus, I’m self diagnosed, and I wonder if drs would feel funny about that even though I self-diagnose most things before I even approach a dr). One time when I did I noticed that the nurses gave me a lot more guidance, but on the other hand the doctor brushed off my concerns about how I was feeling as anxiety (especially as I got emotional/had difficulty talking about how hard it was for me to accomplish things that had once been easier). Basically I was brushed off for my over-emotional response and perhaps the Aspergers (incidentally the actual cause of the problem was later determined by another doctor… it wasn’t just anxiety but it can be hard to talk about problems to the doctor without making them sound either like they don’t affect me at all due to lack of emotion (therefore it “must not be that bad” or that painful) or getting way too emotional (immediately dismissed as depression/anxiety).

    Q3: Not really, I’m generally by myself.

    Q4: I’ve noticed myself rocking more when doctors/assistants leave me alone in the room. One of the things I do regularly is push my cuticles back one at a time so I do that and rub my fingers together a lot more, sometimes with my hands in the pockets of my sweatshirt. If something physically bothers me I either say something if it can be alleviated or grit my teeth through it knowing it will be over soon and it’s all for the best.

    Q5: I haven’t had freezing that I know of, but my teeth are very cold sensitive. I find the anesthetic administration extremely painful. Not having it is worse though. Many times I’ve had teeth drilled or other surgery that I can still feel because I didn’t get numb enough, and it’s hard not to jerk around when the pain hits, so I prefer the numbing. I can still feel heat and cold sensitivity in my teeth after they are numb as well though, so that’s still unpleasant.

    Q6: I haven’t disclosed at the dentist, but the anticipation of all the unpleasant feelings does seem to bring out more stimming.

    Q7: I procrastinate a lot. I also don’t like going for multiple appointments like first evaluation, then followup etc etc. or multiple separated fillings. I’d rather get it done all at once even if it takes a long time so I don’t have to have multiple visits, and I’d rather have things resolved immediately upon finding them because otherwise there’s all the dread leading up to the appointment.

    Q8: Local anesthetics do not numb me enough. I always need to have more than they anticipate and that’s still not usually enough (even when they say so in advance). However since I prefer to have things just taken care of they often think I don’t mind or I wouldn’t, for example, want to get all four quadrants of my mouth drilled the same day. I don’t react well to painkillers but that might be due to how they interact with my other medical issues, I don’t like how they make me feel and I am always worried about getting addicted to them.

    Q9: I haven’t had a lot of options to work with naturopaths but when I have they have worked out well. I have herbal remedies for some things that I still take (skin and allergy conditions, immunity) that work well. I would like more access to these types of treatments.

    Q10: I have dealt with serious depression in the past. I have also had issues with anxiety. I really do not want to go on medication for depression, so with that in mind I finally when pregnant saw a counselor about it (privately) because I was terrified of my depression getting bad again post-partum. As it turned out it didn’t and I’ve had it under control for years now. The counselor was easy to talk to and I felt upbeat talking to her, eventually she said she didn’t think I needed it anymore. On the other hand when I talked to my problems with the person who initially referred me, I could barely have a conversation with her without breaking down in tears (both people were strangers to me). I often have different reactions like this depending on the person: how I get super emotional or I completely close off my emotions. It’s kind of puzzling and leads to widely different interpretations about how I’m doing. I didn’t really like seeing a counselor although I got along fine with her. I think talking about difficulties helps because then I don’t burden the people I know with them, but I’m also afraid to say everything, especially if it makes them worried I may be a danger to my child and leads to him being taken away (I don’t think I am a danger to him but I have a lot of fears). I think doctors could help anxiety a lot by listening and explaining more about how things work and taking my concerns seriously. The ones who do this I have made a lot more headway with in terms of addressing medical concerns. A lot of them are very rushed, they don’t want to listen to me give the full story and they don’t explain much. I also would like the option of more hard tests to determine medical issues (when such tests exists) instead of “well we think this that etc” and wait and see approaches. I wait and see quite a while on my own before I go through the trouble to contact a doctor.

  31. 1. No, I have fewer dental issues than my peers. I have never had a cavity before, although I did have full braces and a retainer for a year or so when I was fifteen (I am currently seventeen). It is odd, however, that I’ve never had a serious dental issue, because I often forget to brush my teeth (it might be because I only drink diet pop and I don’t eat very many sweets); my self-care skills are terrible and often non-existent. Yes, cleanings are usually painful, and I despise the grainy texture of whatever it is they put in there right before I leave.

    2. I haven’t had a diagnosis long enough to be able to answer this question—I was diagnosed only seven months ago.

    3. No. I am seventeen, so if I’m suddenly ill I tell my mother and she deals with it.

    4. Just like I manage them everywhere else: listening to music with earbuds perpetually. It is both a stimming experience and a way to cope with auditory sensitivity. My sensory sensitivities are mostly auditory and tactile, and I don’t have to worry about the latter in the doctor’s office because I simply sit far away from all other people (I live in a rural area, so this isn’t too difficult).

    5. I’ve never had a filling. The one time I had the freezing I did find it painful.

    6. I have never had the opportunity to disclose it to the dentist, though I don’t think I would. I only see him annually, so I can put up with the pain for about twenty minutes once a year. I don’t know whether I behave more or less autistic—I would surmise more, because when I’m experiencing a lot of sensation (be it positive or negative) I tend to act more autistic.

    7. I’ve never had any of these done.

    8. Many painkillers don’t work for me, for example Tylenol and regular strength Advil. Sometimes extra strength Advil works for my migraines, but not always. I get hives when I take sulpha-based medications.

    9. Naturopathy is almost completely false—it is woo. I am very much against alternative medicine practises because they are antiscientific and do not value an evidence-based approach to health. Therefore my answer is no.

    10. I had anorexia nervosa when I was fourteen and the approach used by the psychiatrists and social workers in the hospital did not help me at all. While they assisted me in becoming physically healthier, their techniques did not benefit my mental health. I didn’t have the diagnosis at the time, but I think it would have been very beneficial for them to have known about the ASD. This way they could have realised that part of the issue was that diet and exercise were my special interests at the time, so I could hardly ignore these things—I loved to learn about them. A year later, when I began the ninth grade, I’m fairly certain I became depressed—perhaps not clinically so, but enough that I came home from school and wept on a frequent basis. This was because school was too difficult for me, given the changing social expectations. I stopped attending school and chose to home school myself via distance education, and my mental health is now very good. Thus, I think I would tell mental health professionals not to underestimate the detrimental effect of “passing”, or attempting to do so, on the mental health of someone with ASD.
    I also have significant issues with anxiety and always have, even when I was very young, but there is little I can do about this.

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