Adult ASD: Seeking a Professional Diagnosis

Part 6 in the I Think I Might Be Autistic Series


There are a number of reasons that an adult might want to seek out a diagnosis by a professional:

  1. To become eligible for services
  2. To obtain supports or accommodations at work or school
  3. To increase the likelihood that therapy or counseling takes aspie/ASD traits into account
  4. For peace of mind and/or validation of a self-diagnosis

Primarily, I fell into the last category. I needed to know that it wasn’t “all in my head” and getting a diagnosis by a professional seemed like the most conclusive way to do that. However, if I ever go to graduate school (or–gasp–get a job), I like the idea of having an official diagnosis to back up any requests for supports that I might choose to make.

So, how do you go about getting evaluated for Asperger’s or autism as an adult? First, be prepared to face some significant challenges:

  • You’ll need to find a psychologist, psychiatrist or neuropsychologist who does adult ASD evaluations. Depending on where you live, this task ranges from difficult to nearly impossible.
  • You’ll probably have to pay for the evaluation yourself. Most insurance companies in the US don’t cover adult ASD evaluation. Be forewarned, a full evaluation can cost anywhere from $1500 to $3000. I’ll talk about other, potentially less costly options below.
  • The process of getting diagnosed may take months or years and you may encounter misdiagnoses and misinformation along the way.

With all of the discouraging stuff out of the way, let’s look at some of the options for getting diagnosed:

Finding a Provider

A good place to start if you’re in the US is the Pathfinders for Autism Providers Directory. Plug in your zip code, how far you’re willing to travel (further will give you more options–I chose 50 miles when I did my search) and select the “Getting Diagnosed” option in the Categories list on the right.

You’ll be given a (hopefully) long list of results to comb through, including psychologists, psychiatrists, neuropsychologists and licensed clinical social workers. I know of people who have been diagnosed with ASD by all of these types of professionals except the last. Read the provider descriptions, visit their websites and/or call providers to narrow down your results to those who do adult evaluations.

Some other options for finding providers who do adult evaluations:

  • Word of mouth: If you can locate autistic individuals or parents of autistic children in your area, ask them for referrals.
  • State, provincial or local autism group: Google “[your state/county/province/major city] autism services” and look for .org website addresses in the results. You should find at least one local nonprofit or community autism services organization in your area. Call and request a referral for an adult evaluation. If you find more than one, call all of them. Different organizations have different missions and their resource lists vary. You can also find a good but not exhaustive list of state-by-state resources on the GRASP website.
  • Local university: Call the medical school or teaching hospital for a large public university in your area and speak with someone in the neurology department. You may get transferred around a lot and have to explain your question repeatedly but this can be a way to find an adult specialist if you’re coming up empty in other places.

The Role of Your Primary Care Physician

Surprisingly, one source that probably won’t be helpful is your primary care physician. I explained my concerns to my doctor and his reply was to offer to write me a prescription for a beta blocker for anxiety. When I turned that down, he suggested counseling.

What he didn’t suggest was that I get evaluated for ASD. His approach was focused on treating the symptoms; he seemed to think the source of the symptoms was irrelevant. That’s not to say he’s a bad doctor. He probably wasn’t trained to handle this type of question. Autism is still seen by many as a childhood disease.

If you live outside the United States or if your insurance covers ASD evaluation, a referral from a primary care doctor might be required to qualify for insurance coverage (or rebates or whatever form subsidized health care takes in your country). In this situation, you may need to approach your doctor armed with information about adult autism/Asperger’s.

This is where your discovery process and perhaps self-diagnosis will come in handy. While there is increasing awareness of the existence of undiagnosed adults, many primary care doctors aren’t well-informed about the subject. You may find that you’re more knowledgeable than your doctor. Don’t be afraid to advocate hard for a referral.

Lower Cost Alternatives to a Private Provider

If the cost of a full evaluation is prohibitive, there are other options to consider:

  1. Ask your community autism services organization if they have a staff or consulting psychologist who can do an evaluation. Depending on your financial situation, they may offer this service at reduced cost or as part of their services to the community.
  2. Some universities with teaching hospitals or clinical centers offer ASD evaluation conducted by supervised graduate students on an ability-to-pay basis.
  3. You may be able to obtain a diagnosis as part of ongoing therapy with a psychologist or psychiatrist. Sometimes a therapist will raise the possibility of ASD or be willing to commit to a diagnosis on the basis of information you share during therapy sessions.

(If you obtained your diagnosis in a way that I haven’t mentioned, please let me know in the comments and I’ll update this section with additional options. I apologize for the lack of information about getting diagnosed outside the US. Hopefully commenters can help out there as well.)

Making the Appointment

After doing extensive research, including everything listed above plus some fruitless things not included here, I came up with exactly two possibilities within a 50-mile radius of my major metropolitan city.

Armed with my very short list, I called the first provider on it–a psychiatrist whose name I’d obtained from a major university. This didn’t go as well as I’d hoped. The doctor was extremely condescending and basically said, “Adult evaluation is really expensive and I doubt you can afford it and why do you want it anyway?”

I gave a brief stuttering answer, hung up the phone shaking, and spent two weeks working up the courage to call the second and only other name on the list.

The second option was a private neuropsychology practice specializing in cognitive testing for children and adults. To my great relief, the person who answered the phone didn’t find it strange that I was calling to schedule an evaluation for myself without any sort of referral. She didn’t treat me like an idiot or become impatient with my questions.

I gathered the information about the testing process and said I’d call back after thinking about it. The evaluation was going to be a big investment and taking that final step was intimidating. Bizarrely, my biggest fear was that the tests would prove I didn’t have Asperger’s or that the psychologist would think I wasn’t autistic enough to merit a diagnosis. Then I’d be back to having no explanation for all these atypical things about me.

After a couple of days of thinking it over, I decided that I definitely wanted to go forward. My husband was supportive of my decision and offered to come with me to the appointment if I wanted him to. I didn’t take him up on the offer, but it felt good to know that he was 100% behind me.

Going At Your Own Pace

Whatever path you take to finding someone who can evaluate you, know that it won’t likely be a direct route. It’s perfectly okay to feel like the biggest first step you can manage is to bring up a list of results on the Pathfinders website. Maybe your next step is reading about the providers and a few days later you might gather the energy to start making a list of providers to call. It may take weeks or months to start making those calls and yet more months to commit to meeting with a professional or scheduling an evaluation.

Take your time. Ask for support from a trusted person in your life if you feel comfortable doing so. Getting diagnosed can be an uphill climb. Pace yourself.

Finding a Professional who Works with Adults

  • Be prepared to do a lot of research.
  • Look for psychologists, psychiatrists or neuropsychologists who are experienced in diagnosing adults with ASD.
  • If you have to get a referral from a primary care doctor, be prepared to advocate for yourself.
  • If the cost of diagnosis is prohibitive, look for alternatives to private providers.
  • Be patient and go forward at your own pace.

Next in the series: Preparing for your ASD Evaluation

71 thoughts on “Adult ASD: Seeking a Professional Diagnosis”

  1. I’m curious, if one falls into the last category – peace of mind and validation, how much of that is granted after just an evaluation? There is a specialist in my town recommended by Rudy Simone’s website as someone who is very good with ASD in adult women but the price! An evaluation to see if you might have ASD is 1500, and if they decided that you might, then you can have the full evaluation and presumable diagnosis for 3000. It made me wonder if the initial evaluation would be a good tool towards accepting and validating a self diagnosis and not thinking you were making it all up.

    1. Wow, none of the providers I looked at or contacted had a two step process like that. I did read up on one that recommended a 1-hour interview which would then be followed by a full evaluation if the doctor recommended it, but it wasn’t priced anywhere near that steeply. I went for my evaluation with the understanding that a diagnosis would result or be ruled out based on my one (very long) visit.

      With regard to peace of mind, I’m glad I got diagnosed. It’s made things very concrete, which is important for me. I’d say that the peace of mind I got out of the process has been substantial. That may differ from person to person, of course. Ultimately, I guess it comes down to how much you feel you need an ‘official’ diagnosis to feel content?

  2. Great advice and clearly listed options!

    In Australia, a psychologist consultation cost around AUD240 per hour/session without a partial Medicare rebate. To qualify for the partial rebate, one must get a psychologist referral from a GP (general practitioner), paediatrician or psychiatrist – to rule out all medical possibilities before handing out the psych referral, ie. blood test.

    I had to see the GP twice, costing AUD35 per consultation, the first consultation was gathering information about my medical history and questioning my mental state, the second consultation the GP diagnosed me for anxiety disorder and wrote me the psych referral following a negative blood test.

    As per what the author said, one must advocate for the cause – my GP thinks Asperger’s Syndrome and Autism are two totally different “thing”, he said only a psychiatrist can diagnose AS. Interestingly, he also lost the ability to spell “Asperger’s” correctly on my second consultation. (My psychologist later confirmed GPs’ skepticism is common)

    The psych referral is for 6 sessions per year, an additional 4 can be given if after the 6 sessions, the psychologist think more are needed. One will have to go back to the GP for a second psych referral. I imagined it will be the same procedure as the first time.

    With the partial Medicare rebate, I get AUD124.50 back for each session. I had planned to use my 6 sessions to seek consultation on managing my symptoms, which are very similar to those of AS, after my first session the psychologist recommend that I go for a formal diagnosis. The diagnosis session is usually a 3 hours block for adults, however, due to limited availability, mine have been broken down to 3 x 1 hour sessions over the period of one month.

    I think it is ok since I get rather stress and sweaty by just being in the psychologist’s office… That way I get time to recharge in between but also more time to agonise over the final result: do I belong with this tribe or I was simply born ‘bad’? That, is another question 🙂

    Note: AUD is similar value to USD

    1. Re. seek consultation for managing AS-like symptoms, that has been my approach. I am also in Australia, and also get the partial Medicare rebate with 6 session per year (+ was extended last year). Generally the GP will ask you to provide the name and details of a psychologist for a referral – that is my experience. Upon my third attempt at counselling, and increasingly realising that my problems are similar to female AS, for my third referral I found a psychologist who specialises in ASD. I didn’t specify to my GP what the psychologist specialises in, and he did not ask. I wasn’t really after a diagnosis (although I did want a professional opinion/clarity – eventually), but I needed to meet understanding for my situation. That has worked well – so the question of diagnosis did not seem important for the therapy because the therapy was already relevant and the psychologist ‘gets me’. However, during some difficult months lately the’ label question’ became increasingly important, with relentless speculation… but then it was easy to ask my psychologist and trust his judgement because he already knows my personality and history quite well. So that is a soft approach I would recommend for someone in Australia who needs understanding and help with ASD-like personality traits and who isn’t desperate to get a diagnosis first thing. An ASD specialist doesn’t turn someone away who he feels he can help, just because the person doesn’t have a label and may be under diagnostic threshold. ASD-assuming therapy is relevant the same whether you are slightly above or under the diagnostic threshold.

      1. Thank you for expanding on littleostow’s comment and suggesting another “soft” option for diagnosis/therapy. I think it’s really important for ASD individuals to work with a therapist who understands what adult ASD looks like and what kinds of therapy are helpful.

    2. Thank you so much for taking the time to explain how the process works in Australia. I’m going to include a note for Australian readers to check the comments.

      You’re getting closer to a diagnosis! Have you gone for any of your evaluation appointments? I did mine in one day but it was exhausting. On the one hand it was good because by the end of it I was super autistic presenting so I didn’t have to worry about “not seeming autistic enough” for a diagnosis. OTOH, it probably affected some of my test results, because toward the end I was barely able to focus.

      1. Yes I have, saw the psychologist for the first time 3 weeks ago and went to my first of the 3 diagnosis assessment session last week.

        For the diagnosis assessment, she asked me to bring the hubby which I think helped in providing or clarifying things from an outsider’s perspective, during the session it was a series of interview based on set questionnaires (probably one of those online test).

        Like you, I seek a professional diagnosis as opposed to self-diagnosis because I need that clarity and peace of mind, perhaps it is part of the black and white thing as I don’t like ambiguity. I also need professional validation as my family think I’ve made these up as an excuse for my bad behaviour as a child, I want them to just accept me for who I am and I didn’t do all those things to spike them. It’s a long shot but a worthy one.

        It was also good to finally be able to talk to someone other than the hubby about AS (poor guy – I bored him sometimes with my ramblings), someone who is an expert in this field who understand my issues, somehow validate what I said and didn’t dismiss me as weird. That alone was very comforting.

        Mados – Thanks for pointing out the soft option 🙂

        My psychologist, Danuta Bulhak-Paterson, specialises in assessment and therapy for girls/women, I am lucky to able to get to see her before she goes on a 6 months maternity leave in April as she is very popular. I’ve decided to use my time with her to seek diagnosis instead of therapy, I need the peace of mind and I can always seek out other psychologist for therapy when she is not available.

        1. Bringing along someone who knows you well sounds like a great idea. Although I think my husband’s gut reaction would be to defend my odd behaviors and say he’s fine with them. 🙂

          I also felt the sense of relief and validation you mention when talking to your psychologist. The psychologist who did my diagnosis had a good understanding of adult ASD, which in itself felt very validating. He was also very nonjudgmental and talked about Asperger’s traits in a fairly neutral way.

          It’s good to hear that the process is going well for you so far. 🙂

  3. And to Cynthia: great well organised, actionable article! (as usual)

    After addressing reason 3 with my comment to Littleostow, I would like to say something about reason 4: peace of mind/validation.It seems to me that is mostly the really strong motivator for seeking a diagnosis. I think it has to do with the ‘tribe-like’ online aspie communities and their (typically) strong black-white/binary tendencies in their attitude to autism and normality/NT. Ironically, since it is a spectrum).

    1. Thank you! I wanted the validation for more personal reasons, but it also feels important to have a professional diagnosis if I’m going to write about autism in this way, I guess. The online aspie communities can be rough waters, which is, as you say, very ironic. What is perhaps even more ironic is that people who are prone to black and white thinking as part of their neurologic make-up are also diagnosed on a spectrum. 🙂

      1. Yes:-) That is ironic on multiple levels.

        I didn’t mean to suggest that the it was the only reason, anyway… but the extremely strong focus on and tension around an official diagnosis has always baffled me and actually made me back off a bit from both the diagnosis question, the jargon, and from drawing a conclusion about where I stand. It is not that I don’t understand the need … as I said, the last few months I’ve felt a similar need for clarification and being able to position myself mentally relative to the ‘normal’ world – Like ‘I don’t belong here, so where do I belong?’ It is also a way to see if one’s understanding of what ASD and normality means is correct… to silence relentless & energy consuming speculations … that is very important to me because I never stop speculating about things, and uncertainty is exhausting.

        What I don’t like is how much power to define a person’s identity is put in the hands of professionals who often have just a few hours to evaluate and categorise a persons personality profile, and how a brain structure that can cause a lot of distortions is ‘desired’ (I know I know, it is not like it is not already there… but the ASD identity is ‘desired’… Man I feel I’m walking on eggshells here). I would say, the key benefit of an ASD diagnosis is the insight and self-understanding to work to minimise those distortions (such as black-and-white thinking) and optimise the strengths (such as focus, perseverance, knowledge, good systems). Many traits can of course be strengths AND weaknesses, depending on the setting, and that is also part of the importance- to be able to work towards placing oneself in the best possible setting.

        My point is that too strong diagnosis-desire can create a culture where the distortions, and not just the strong sides, are seen as something to allow, something to preserve, not something to be aware of with the purpose of minimising their negative impacts… because they function like tribe ID badges. If I tag-skim ASD blogs, Tumblr blogs etc then there are some that are objective and intelligent, like this one (and many others), but then there is also a lot of emotional online shouting and pointing fingers of NT/Allistics (particularly bad on Tumblr)… and sometimes definition of traits I would call definitely normal as specifically autistic, because when the world is black and white and the autistics are the good guys then any trait that any of the good guys have must be autistic so nothing sticks out ‘on the other side’. That is just irrational blur of categories… Anyone who is autistic has some NT traits, anyone who is NT has some autistic traits… and there is nothing wrong with that.

        The us VS them attitude, allowed to go on with not much critical self-reflection going on, ironically mirrors the worst side of the social world: mindless herd mentality. And while it isn’t the root of the need for a diagnosis, it amplifies the significance of diagnosis tremendously… because persons’ authority and status within the autism community to some extend hang on ‘being autistic’ (proven = better). Which really can’t be good for the community. Because I can think of plenty of persons with an Asperger’s diagnosis who (based on their online communication) don’t seem very smart, and don’t seem to care about developing or trying to understand others’ perspectives … because they already have the ‘ badge of validation’ they need within the community, so everything they say have some sort of validity just in form of its representativeness of autism/Asperger’s… even when it is emotional stereotype-based rant attacks on ‘NTs/Allistics’.

        1. I was trying to agree with your comment with my last reply, but I might have failed. 1.5 days of shutdown followed by a meltdown doesn’t do much for my communication abilities. 🙂

          The uncertainty of not having a diagnosis bothered me a lot. I’ll go around and around with something in my head, so knowing for certain has helped me feel more settled. And I did for a short time think about the idea that the person who diagnosed me hardly knew me at all. How could he necessarily be more right about me than I could be? It’s a funny sort of power we give to mental health professionals.

          The understanding that comes with learning more about AS has been the biggest benefit, of course, but I think I was already reaping that before I was “officially” diagnosed.

          The online autism community is a rough place to hang out, for sure. There is so much dissent and anger and hurt and infighting. It’s not the faint of heart. I still feel like I’m learning to be “small a” autistic. I’m not really ready to be “capital A” Autistic yet, though I admire those who have the energy and will to fight the acceptance fight day in and day out. I think advocacy is important and I think people go about it in all sorts of ways – some loud and some quiet. I don’t understand at all the autistic-on-autistic fighting. It seems counterproductive and unnecessary. *sigh* I think the ASD community is still very young, if that makes sense? Actually, I have no idea. I find it all as frustrating as you do.

      2. Hi, can I kindly ask you to delete the above comment and replace it with this one due to typos, spelling mistakes and tag failure:

        Uhm, I hope my long opinionated comment isn’t annoying/provoking in some way. Your post is of course about how to get a diagnosis when desiring it and not about the community culture surrounding it. I just find it to be a very interesting (and important) sociological-like aspect of diagnosis, and got carried away a bit. I don’t mean to in any way invalidate the need or desire for a diagnosis, the community overall, or the need to belong.

        1. I deleted it! Your post wasn’t annoying at all. The issues of identity and community and labeling are so complex. I think it’s good to talk about them and think about them. My own ideas seem to be shifting around quite a bit. I have the annoying ability to see both sides of issues, which I think often makes people think I disagree with them when in fact I’m not really take either side! I’m all about people doing what feels best for them. 🙂

      3. Sorry to hear that;-)

        There was nothing wrong with your communication, I’ve just had those thoughts on my mind for a while without being able to phrase them, and then they thought of spilled out when triggered by the context, I guess…

        The uncertainty of not having a diagnosis bothered me a lot. I’ll go around and around with something in my head, so knowing for certain has helped me feel more settled.

        I’m totally with you on this one, probably also more than I’ve been willing to admit to myself:-)

        My story is a bit different, because I’m an extraordinarily sceptical, speculative person and have found it really, really hard to draw a definite conclusion. I seems like the typical way to diagnosis is to 1. get a suspicion, 2. research a lot, 3. find overwhelming amounts of evidence, 4. draw a conclusion, and 5. Try to get that conclusion validated by a professional (sometimes desperately). In my case, I have done phase 1, 2, 3, had phase 4 relentlessly shift back and forth over a long time, trapped in relative thresholds and ambiguous definitions, the lack of clarity being an ongoing source of stress & uncertainty, and then sort of tried to use phase 5 to get a grip on phase 4. So drawing a definite conclusion myself is the real big difficulty. (this question isn’t the only one I have that problem with, but it is an important one)

        I was thinking that although in writing, there seem to be many striking similarities, there’s much more to it than that – like face expressions, body language interactiveness, gait, communication – coherence in the way of talking et.c… there would be visible peculiarities that set a person with Asperger’s, and I wasn’t sure if that is the case with me. So I wanted a psychologist’s evaluation over a long period of time, so I would trust a potential diagnosis, and not think ‘He might just have a biased impression because I was so nervous those 2-3 sessions’. I had done all the online AS tests I could find online and came out on the ‘aspie side’ on all of them, but I thought that has mostly to do with me being a very solitaire person… that anyone with a solitaire, introvert, INTJ (Myer-Briggs)-like personality type would come over the thresholds, and I was thinking ‘sure I’m certainly ‘somewhat in that direction’, but that doesn’t equal a clinical diagnosis’.

        So I have seen a psychologist who specialises in ASD for a year (with some pauses), with the primary purpose being counselling/therapy, not a diagnosis. He did an questionnaire test for Asperger’s with me a year ago anyway, where the result pointed towards me having Asperger’s, but he asked for what I thought, and I wasn’t sure… (also, the questionnaire confused me). So I asked him to get to know me really well first, and then give his professional opinion. The therapy is now in its final stage, and he was talking about passing me on to a guy he has hired who specialises in employment/career counselling for persons with Asperger’s (Which is a great idea! I am very happy about that initiative). So I finally asked him if he thinks I have Asperger’s, and he said yes and added that he has no doubt about that at all. He also asked if I don’t think so too, and I confirmed that I do think that is the case. So I guess that is the closure, because I do trust his professional opinion. He has many years of experience in this area, other female adult clients with Asperger’s for comparison, and he has had exposure to my communication style, manners, body language et.c over good a period of time, and is qualified to diagnose it, so I believe his judgement. I don’t have any sense of ‘aspie group identity’ though, I still can’t really believe that/if I’m really sort of ‘normal’, ‘typical’ for a group of people, a specific neurological set-up. I’m a bit group identity aversive in general – that might be part of the reason, I am not sure. (on the other hand I’m here, right;-)

        The understanding that comes with learning more about AS has been the biggest benefit, of course, but I think I was already reaping that before I was “officially” diagnosed

        Good point, that is right!

        1. Oh, okay, I’m glad to know we didn’t totally get our wires crossed.

          It’s interesting that you were skeptical about your own sort-of conclusions. I think I’ve had some doubt in the back of my mind, but I was so set on having an explanation that finally fit, that I kept pushing my doubts aside. Ironically, when the doubt became strongest was when I finally made my appointment to get tested and in the weeks between the testing and the diagnosis.

          I was also concerned about getting evaluated based on just that one appointment, worried that I would instinctively cover my ASD traits because I tend to try to present very “normally” around authority figures. It turned out that I was so nervous and then later exhausted during the testing that I couldn’t have hidden things if I tried.

          The group identity? I’m not sure if I do or not. I know that I like being able to think of myself as aspie/autistic as an identity/shorthand explanation. I also feel a lot of kinship with others on the spectrum when it comes to seeing that someone else thinks or behaves in the same unconventional way that I do. But I haven’t joined any online aspie-only groups, rarely frequent the forums and couldn’t imagine myself attending a RL support group. So I guess my group identity is more in my head! 🙂

      4. The online autism community is a rough place to hang out, for sure. There is so much dissent and anger and hurt and infighting. It’s not the faint of heart. I still feel like I’m learning to be “small a” autistic. I’m not really ready to be “capital A” Autistic yet, though I admire those who have the energy and will to fight the acceptance fight day in and day out. I think advocacy is important and I think people go about it in all sorts of ways – some loud and some quiet. I don’t understand at all the autistic-on-autistic fighting. It seems counterproductive and unnecessary. *sigh* I think the ASD community is still very young, if that makes sense? Actually, I have no idea. I find it all as frustrating as you do.

        That is right… it is scary in some places.

        I remember when I worked in an institution for non-verbal autistic teenagers – There was a lot of social tension (and bullying!), but amongst staff and in the staff-parent relationships. I hope it isn’t something that comes with the territory!

        As to the ASD community being young, that may be right… Maybe some strong, mature leaders with solid balls (metaphorically!) will grow out of it over time and nurture a more mature, less group-think link communication style.

        1. I think and hope that strong leaders will and are emerging. I suppose dissension comes with the territory of any group – I can’t think of a group I’ve been around that didn’t eventually have some sort of kerfuffle. 🙂

      5. I deleted it! Your post wasn’t annoying at all. The issues of identity and community and labeling are so complex. I think it’s good to talk about them and think about them. My own ideas seem to be shifting around quite a bit. I have the annoying ability to see both sides of issues, which I think often makes people think I disagree with them when in fact I’m not really take either side! I’m all about people doing what feels best for them. 🙂

        Thank you:-)

        That is definitely not an annoying ability, that is a very healthy-for-the-community ability. I wish everybody remembered to shift perspectives in a debate.

        Actually I think i have a similar problem… I raise a different perspective when I think a discussion is too one-sided and has lost perspective, and then I suddenly find myself in the role of the enemy… Expected to defend a stand point that isn’t particularly mine, I was just reminding of its existence and that it does have some validity.

        Like trying to explain the Christian view point in an atheist debate because they have totally misunderstood it (so what’s the point of discussing it then? That’s just an empty group confirmation exercise) and then suddenly being ‘tasked’ with defending hideous fundamentalist Christian view points people presume I have. Or the contrary – trying to correct misconceptions about typical secular perceptions in a Christian setting, and suddenly have all these assumed hard core anti-Christian opinions hung on me. (I totally avoid that type of debates nowadays… a total and frustrating waste of time)

        1. I do this too! And then find myself wondering why the heck I’m defending something that I don’t even believe in wholeheartedly. When I give up and say I was playing devil’s advocate, people often look “betrayed” or something, like I’ve tricked them.

      6. I think and hope that strong leaders will and are emerging. I suppose dissension comes with the territory of any group – I can’t think of a group I’ve been around that didn’t eventually have some sort of kerfuffle.

        I think you are one of them:-) Leadership isn’t a formal thing, necessarily. It is just some strong persons setting a good tone and making sure the debate has some reality check/different perspectives and doesn’t get too Us VS Them-ish. Your blog is part of the community too, and so are the people who comment (more or less). Actually, that is part of the beauty of the Internet… All these loosely connected networks encompassing a variety of virtual platforms. Group identity doesn’t need to be any kind of official group membership.

        Kerfuffle: yes you are right:-)

        1. That’s so good of you to say. I hope I’m contributing. I feel like I am and I especially feel like the discussion that takes place here is. I have such great readers and commenters and I’m learning tons from this process. It’ll probably be the younger people who truly emerge to lead things but I’m thrilled to be here and be a part of what feels like the early days of change.

      7. Thanking you so much for taking you time to give so good answers to my comments… I do realise that I wrote quite a lot of them Yesterday!

        It’s interesting that you were skeptical about your own sort-of conclusions. I think I’ve had some doubt in the back of my mind, but I was so set on having an explanation that finally fit, that I kept pushing my doubts aside. Ironically, when the doubt became strongest was when I finally made my appointment to get tested and in the weeks between the testing and the diagnosis.

        One major thing that has fuelled my doubts and confusion and still does a bit, is that I find the definitions of what is ‘Normal’ very tricky; a grey area. Without being confident about knowing what is normal, pointing out what is ‘Not Normal’ gets much harder!

        I can recognise most of what you write about here on your blog – many descriptions are like looking into a mirror and see a very similar structure, BUT that doesn’t apply to upbringing and environment, I think. One of the few things I’ve felt certain about was that if I do have Asperger’s, then my brother and dad definitely do as well, and I think my mother do as well (although with her, maybe not diagnosable). And several other family members on both sides. That is a bit over whelming, ‘That can’t be right! I must have misunderstood what it means!’.

        While I have grown up feeling a bit ‘socially off / checked out’, I didn’t think I was ‘different’ and couldn’t understand when I was sort of singled out. I thought everybody are different from each other, why would I be more different? And it wasn’t my own family pointing to ‘differences’. They are all sort of eccentric and often a bit ‘off’ in different ways. My maternal family consider themselves to all have a big strike of Neuroticism/Compulsive disorder inherited from my maternal grand dad (sort of half jokingly). At home, I was generally immersed in my own thoughts & activities, and that was normal. So was my brother, and my dad and my mother as well. Like 4 parallel universes;-)

        It did occur to me, when occasionally visiting class mates, that other families were much more ‘tight’ and interactive, talking together a lot. So if you can see the pattern… it is much less clear to me what has to do with my basic neurological set-up, and what is environment, because there isn’t a stark contrast to go by.

        1. It makes a lot of sense that being raised in a more eccentric or unconventional family would lead you to question what normal is and how we define things like AS. I think I grew up feeling different even from my own family and definitely from most of my friends and their families so I had a really strong drive for understanding why what was rather than questioning the idea of differences.

          What you say about environmental influence makes a lot of sense to be me because my daughter is not autistic but she does have some autistic traits, especially in terms of some of her social habits. I think she picked them up from the behavior I modeled for her when she was growing up. The thing is, as she’s come into adulthood and had people point out these traits to her, she doesn’t have much trouble changing them to fit typical social expectations for politeness, etc. She’s also come to realize that other families are very different from ours in how they interact, which was a big surprise, I think.

      8. I hope I’m contributing. I feel like I am and I especially feel like the discussion that takes place here is.

        Very much so!

        Yes I too think it is some great discussions that take place here… and excellent facilitation!

      9. What you say about environmental influence makes a lot of sense to be me because my daughter is not autistic but she does have some autistic traits, especially in terms of some of her social habits. I think she picked them up from the behavior I modeled for her when she was growing up. The thing is, as she’s come into adulthood and had people point out these traits to her, she doesn’t have much trouble changing them to fit typical social expectations for politeness, etc. She’s also come to realize that other families are very different from ours in how they interact, which was a big surprise, I think.

        Heh, although I don’t know her, I think I totally get her on that experience:-) I was thinking that could be my situation… That maybe I just had picked up habits my parent could get away with, but which I couldn’t – and didn’t know what else to do (that was the case to some extend I think, although I have by now weeded out the most annoying tendencies)… and then withdrawn due to too many painful mishaps all the way through, and therefore fallen behind in social development, experienced more failures, withdrawn more etc. That was one of my theories.

        Then again, I’m the only one in my person who didn’t ‘pass’ most of my young adulthood. – Who had a severe & long mental & social deroute and ‘fell off’ the normal path. My dad does not have friends, but he has never had any employment problems that I’m aware of, and doesn’t feel he has any problems. He is just content in his own company, and I think he doesn’t really understand all the fuss about having friends. My mother has friends, and my brother too.

        My brother is more ‘aspie-like’ that me (very nerdy and physically awkward), but has got on much better socially in school et.c. all the way through, although I think I have overtaken him now:-) in social maturity. I think the difference (that he ‘passed’ adolescence and I didn’t) was caused mainly by the gender difference. The social expectations to girls and women are much higher, and they became too high for me from the teenage years, while my brother could get a away with being different, quirky and aloof in a cute way. Also, his big interest is music (plus now also electro-engineering) and he has always played in bands and built himself a name as studio musician – so he sort of built himself an excellent social shelf, I think, where he was valued and connected with others through his skills and talent.

        All this is of course my totally subjective analysis, and I only dare speculate like this about my family because I’m anonymous online (and so they are too).

        1. Have you considered writing something for your blog about passing? Someone recently asked me to write about it and I’m thinking hard, but nothing has gelled yet. It’s a subject that I don’t think has been written about enough. Especially in the sense that some people can pass because they have a particular talent or find themselves in a particular industry or culture that makes passing easier. It seems like each of your family members has at least one or two strong traits that assists them in passing. For me, as a kid, I think my intelligence helped me pass or at least reassured people that I would “be okay” in spite of my social oddness (and this is something I have a draft of and will post soon).

      10. Especially in the sense that some people can pass because they have a particular talent or find themselves in a particular industry or culture that makes passing easier. It seems like each of your family members has at least one or two strong traits that assists them in passing.

        You are right! My dad is a navigator. It is a job where he is expected to behave in a very formal, correct manner (which he does anyway, even with close family) and is alone most of the time on his 12 hours shift, just keeping an eye on the instruments, observing the ocean et.c. Perfect job for a very solitaire man.

        My mother’s big interest is Spanish language, and she is an exceptional teacher in Spanish. I have heard native speaker’s say that they can’t hear she isn’t a native speaker, and I have studied together with a girl who also happened to be an exceptional Spanish talker, and she say my mother’s name in a book I had borrowed and said ‘Do you know her? She was my best teacher in high school’. My mother also speaks French, German, Arabic, and Swedish (possibly more) besides English and of course Danish, and she loves interacting with people from other cultures. I think that’s because then she is just ‘Danish’, and her manners are accepted (including talking too much in a rather repetitive manner and never really listening to anyone else). I too have noticed that subtle social differences that can cause ostracism in one’s own culture don’t necessarily matter much in a foreign culture. So I think that’s her way of passing: multicultural disguise!

        As for my brother, I already explained mentioned his niche – music.

        Mine was imagination and creativity as a kid. I was constantly making / writing stories, drawing, working on ideas, making things… e.g. I made Christmas presents all year around. That worked well for me. People liked that I was creative and thought it was entertaining, so it gave me a positive identity. Best of all: creative production allowed me to spend all the time I wanted on my own engaged in pleasurable activities while still in principle ‘making it for other people’ = being connected. Creative projects are also great as shared play activities, a good un-frustrating way to play together: e.g. each work on one’s own story or drawing, but still be doing it together, in principle. I have done tons of shared creative projects during my childhood. ‘Creating something together’ is the social activity that has always worked well for me.

        For me, as a kid, I think my intelligence helped me pass or at least reassured people that I would “be okay” in spite of my social oddness (and this is something I have a draft of and will post soon).

        That doesn’t surprise me at all! I look forward to read it. I am very impressed by both the quality but also speed of your writing. I am a very slow writer myself… You asked if I had thought about writing about ‘Passing’ (thanks for asking!): no, but it is a good idea.

        First I’ll try to complete some of the almost-finished post I have sitting in my big backlog of draft posts. I wish I could write & publish a bit faster, because it would be great with a ‘synchronisation effect’ of posts around the same key topics from different perspectives on different blogs in the same time period. I’m usually lagging way behind the posts inspire me to write about something… and it annoys me, I’ll try to improve.

        1. Actually, Tony Attwood talks about how aspies often feel more comfortable with people of another culture. My husband is from another culture than my own and it does seem to have removed some of the initial pressure to be “normal” by cultural standards for me. I also really enjoy visiting his country because no matter social mistake I make, people are more likely to attribute it to me being a foreigner. 🙂

          I’m a really fast writer as long as the ideas are flowing. Since autism is one of my big special interests right now, the ideas flow 24/7. I’m going to post the intelligence one next week I think. I’m looking forward to whatever you post next!

      11. I also really enjoy visiting his country because no matter social mistake I make, people are more likely to attribute it to me being a foreigner. 🙂

        Heh, that is a great trick! – The polite assumptions people make about foreign guests!

        My husband is from another culture than mine too too:-) plus we are both immigrants Australia. Church and our friends/acquaintanceships mostly comprise of immigrants from his culture, because he is more social and better at creating and maintaining friendships. Is life socially easier this way? Yes… I guess I’ve learned something from my mother’s strategy;-)

        Online communication is another context where cultural differences are ignored, invisible and accepted.

        Thank you! I look forward to read you post about intelligence.

      12. I’m a really fast writer as long as the ideas are flowing. Since autism is one of my big special interests right now, the ideas flow 24/7.

        You write so fast that I can’t even keep up in the comment tracks! I am still commenting here on your ‘older’ posts, and haven’t moved on to the newer ones yet! Thanks for keep responding!

  4. How do you get through finally getting up the courage/strength to get out and begin the process to seek help, only to be turned away with, “We don’t really do that here, and even if we did, Aspergers and Autism are developmental disorders that would have been caught in childhood. How did you do in school? Okay? Yeah, then, probably not….let’s talk about depression and social phobia.”

    We really have only one mental health agency in my area. To get to another one would be a drive across our state, with two babies, and very limited resources. I’m just feeling so discouraged. I walked in today, trying to mentally arm myself and get myself geared up for answers, and felt like I was just pushed aside. When I made the appointment, I asked if I could be seen to begin the process of being evaluated for Asperger’s, and was given an appointment with no troubles. Now I’m wondering if they were just thinking, “Well, maybe she’s mentally ill, this Asperger’s isn’t a real thing, but if we at least get her in here, we can treat her for her REAL crazy.” I feel so distraught, because from reading about Asperger’s in women, I feel like the puzzle of my life has finally fit together. But, still, getting myself out to seek a diagnosis was so hard. I have another appointment set now for this place for a few weeks from now, but I don’t know what to do. Do I go back to a place that feels so dismissive, just to wind up treated for symptoms of depression that I truly feel are situational, and a result of being overwhelmed from life and Asperger’s?

    I just don’t know what to do.

    1. I’m sorry you’re experiencing such a discouraging situation. The people you’re seeing are obviously not familiar with adult autism and the fact that many many adults can get well into middle age or later with undiagnosed autism. I know how much effort and courage it took to make that appointment and ask to be evaluated. Being shot down so completely sounds soul crushing.

      If I were in your place, I would probably chicken out and not go back because I’m terrible with confrontation in that kind of situation but I also couldn’t stand to have my concerns dismissed outright. Hence, my answer would be avoidance. That’s not very productive, though.

      I guess the fundamental question is: do you feel like being treated for depression would be helpful? It sounds like you feel like your depression symptoms are related to Asperger’s and if that’s not going to be addressed in therapy, the therapy may end up being counter productive. On the other hand, if this is your only option for getting help for your depression, can you afford to ignore it? Is it possible for you to take steps on your own to try to lessen some of the daily stresses you’re feeling? I imagine with two babies you have a lot on your plate to deal with, so that may be unrealistic.

      One thing I can tell you is that getting diagnosed gave me a lot of peace of mind, but most of the changes I’ve been making are a result of reading about how other autistic adults cope with things and trying to make one small change at a time to see what helps.

      I’m sorry this isn’t more helpful. Just know that you’re not alone in feeling the way you do and there are lots of places online where you can get support from other autistic adults. Let me know if you want some links.

      1. Thank you for the reply. The “will therapy that is not targeting my true issue be counterproductive?” question is my largest one, too. I am also an avoider, and, after this experience, all I want to do is curl up and avoid the place forever! I can’t stand confrontation, and find it very hard to stand up for myself against another person whose mind is set against me. But, then again, I wonder if going there long enough, I might find someone who is more experienced who would at least be able to give me a referral elsewhere, and, if so, that’s really my only chance where I live. I am torn.

        When it comes to the “depression,” it’s mostly extreme fatigue and feeling overwhelmed. I think of myself as being a pretty happy person. I don’t feel hopeless or worthless, any of those things. (And, I’d know–I have dealt with depression in various degrees for a good part of my life, but I feel that it’s always been situational. Take me out of the terrible/abusive/scary situation, and, voila! I am not depressed. Except for the fatigue, and being overwhelmed by too much stimuli and social situations.)

        I am doing my best to get through things in my life that lead me to feeling this way, but so much of it is completely out of my control. In fact, I was an eye-contact-avoiding, stimming mess at my appointment. Why? I had to change plans suddenly, and walk there, instead of being driven by my husband. (I don’t drive.) I was late. Why? Someone threw bricks into the windshield of our car. I am pretty certain that anyone would be overwhelmed and depressed after something like this, upset at the change, anxious.

        It is one of those things where, I know in my heart that I’m right. The family history of autism helps– (My brother was diagnosed as HFA, and I know that my only first cousin is also Autistic.) — and, of course, my knowledge of myself. My husband is on board, and agrees that it makes sense, wants to be supportive. But, I’m afraid of a world that will continue to judge me as inept, or lazy, that I’m just “not trying,” with an attitude similar to the Center that I had an appointment at–that if it were going to be diagnosed, it would have been in childhood, and, even so, it isn’t really a “thing for adults.”

        1. Maybe giving another appointment a chance is a good idea or deciding on a trial period in your mind and seeing how you feel when that’s up? I think you’ll probably be able to tell pretty quickly if it’s going to be like smacking your head against a wall or if there’s room for progress with whoever you’re working with. I was going to say that telling the person you see that you feel like extreme fatigue is a bigger problem than anything else, but they’ll like cite that as a symptom of depression, which it is, but it’s also something I think every single adult with ASD experiences.

          Your first appointment sounds like it happened in really distressing circumstances (and still they didn’t want to recognize that you’re autistic!) and yeah, I’d say anyone would have been anxious and upset in that situation.

          The misconceptions around autism are hard to swallow. The first person I approached about getting an assessment (a university mental health counselor) looked at me like I had 3 heads and from there it was a really mixed bag trying to find someone who could diagnose me. I got lucky in the end, but I could just as easily see it going the other way and coming up empty because I encountered a lot of confusion and negativity.

          1. Well, I tried continuing appointments, and wound up with an appointment with a psychiatrist there. I was told that she had to evaluate me first, and that if, after talking to me, she felt that a different kind of consultation was warranted (the kind that would lead to ASD evaluation) that she was the only one who would be able to order that. I’m just going to C&P a letter that I wrote to (air? my therapist? myself?) here about that experience. (names/places taken out)

            I approached [clinic] because I wanted to be evaluated for Asperger’s Disorder, or Autism Spectrum Disorder. I have been treated as though I was irrational, as though I was making things up, as though I was stupid for wondering.

            I feel that I went into this expecting to be listened to, to be trusted to relate my own experiences in life, and, instead, I was not believed. I feel that I have been treated like a liar.

            I walked into my appointment with Dr. A today, and told her that I had worried that I would not know what to say at the appointment, and had written up a couple of pages of what I felt I needed the most help with; with what described what I am living with in the best way, and that that might be an easier way for me to get out my full story. She showed no interest.

            Dr. A took one look at me and how distressed I was, and, in retrospect, it seems she immediately decided that I was depressed. The only questions she asked me were obvious depression screening questions, or standard background questions, going over information from a previous visit when I was a traumatized 17 year old girl. No matter how much I tried to explain to her that I was having a terrible day, but that this is not how I feel every day; that I am not hopeless or helpless; that I have good self-esteem, she shut me out. Every time I told her that I was not depressed, that I’d been depressed in my life, but knew that I was not currently, she just kept repeating that she felt that I met many of the diagnostic criteria for depression. Any time I tried to relate a part of myself that didn’t happen to fit into the diagnostic criteria for depression, she either outright ignored me, or implied that I’d already made up a diagnosis for myself, and was just fitting things in my life to fit into that diagnosis.

            When I tried to emphasize issues that I have dealt with since childhood, she asked me why, if I’d always had these issues, was I only bringing them up now? When I explained that, for many things, I had thought that EVERYONE dealt with them and that, for others, I had avoided the stigma that had followed the behaviors of my brother, who was diagnosed Autistic, she asked me, “If he was diagnosed, why were you missed?” as though I was supposed to be able to answer that question.

            She asked if I was applying for disability, and, in the context, I believe that she meant, “Are you doing this so that you can apply for disability?” For the record, I work, although I hate it, and am not applying for disability. I don’t need it.

            When I explained to her that I had entered into service at [clinic] because I was curious if my life’s struggles could be due to being on the Autism spectrum, she asked me, “If you had Asperger’s, how could you be caring for your children?” I was flabbergasted, and insulted. When I stated that there are many women in the world who are on the spectrum who lead good lives, are married, have children, and that since the moment I became pregnant with my first daughter, I have thrown myself into learning absolutely everything that I could about parenting so that I could be successful, she asked, “Then, what are you here for?” When I repeated, “To learn more about myself, to see if I can learn skills to better my life, so that I can be an even better person for my family,” she ignored me again.

            I tried to explain to her that how I was coming across is NOT how I am in every day life. That, if she had seen me three hours prior, I would have been a totally different person. Yes, a person with some issues still, but not on the edge of overwhelm and tears.

            She went to the point where she told me that she could see tears in my eyes (which were there both from being suddenly told that my husband was going to inpatient rehab for 60 days, out of the blue, and tears of frustration for her not listening to me when I told her that I was not depressed!) and asked me, if I was not depressed, why did I have tears in my eyes? I told her, “…well, because of what I’m going through today,” and she asked me, “Why? Why would you cry? Lots of women have their husbands go to inpatient treatment.” I tried to explain over and over again, that it was an overwhelming change, that I’d just found out about this, that I’d have to rearrange my life, my children’s lives, everything. And she just looked at me so deadpan, like none of that mattered, and like it was no rational reason for having to hold back tears. She seemed to be asking me, “….and?” as though she was waiting for a valid reason for my distress. I had no words. I should never have had to argue and rationalize with a medical professional about whether I had the right to feel distressed about a horrible, horrible day.

            She told me, “Patients often come in here with depression, but are so RIGID in what they are thinking that they refuse to see anything but what they are set on,” when I tried to explain to her that I had dealt with depression in the past, as a teenager, and knew my own mind well enough to know that I was not struggling with it in the present day.

            She recommended, over and over again, that I read pamphlets on the symptoms of depression. When I stressed to her that I HAD read pamphlets, and articles, and books, about many aspects of depression, she ignored me, and repeated that I should read some pamphlets.

            In the end, she insisted that I have depression and anxiety. (anxiety, yes, depression, NO!!), refused to even entertain the fact that it could be ANYTHING other than depression, and essentially told me that unless I agreed to give up breastfeeding my 6 month old baby and start taking anti depressants, there was nothing she was willing to help me with. Without truly listening to me, she encouraged me to stop my breastfeeding relationship with my infant to start medication for a depression that I do not have. Even when I told her that what I was interested in was learning about lifestyle changes, and things that I could do to feel healthier, she shut me out and pushed antidepressants.

            She didn’t seem to believe that seeking answers and guidance on how to live better sans medication was a valid reason for seeking help.

            All that I wanted was an open minded, listening ear. For someone familiar with ASD in adult women, who could tell me one way or the other. If the answer was, “We’ve listened to you fully, and are very, very familiar with how this manifests in adult women, and we still feel as though you are not on the spectrum,” I could absolutely have respected that. But, even that was not how I was treated. I’ve been told that Autism “isn’t a thing for adults.” It’s been implied that if I were Autistic, I never would have succeeded in school, and would have had to have been in special education. (both of these by a prior provider) As I’ve tried to explain my world and my experience, I have felt totally steamrolled over with diagnoses that were place on me, seemly in one look at me.

            I don’t know how to go forward with this. I entered into this full of hope that I could find ways to function better in my life. Now I’m here, in limbo, feeling crushed, discouraged, and, yes, angry.

            1. Liz, I think you have every right to be angry. Someone in authority (medical professional) has used her power over you to bully you into something you don’t want to do. She is so, so wrong.

              All I can tell you is I hear you. And you have the right to be taken seriously. You have the right to be angry. This has happened to a lot of us and I hope you find a professional willing to listen, but even if you don’t then we’re still here. And we listen.

            2. Thank you so much for reading and listening. It is sad/comforting to know that this has happened to others, too, and that I’m not alone, and it is very comforting to know that I have support.

            3. Wow, that was so hard to read, I can’t imagine how difficult it was to experience it firsthand. I’m sorry you were disrespected and ignored by someone you went to seeking a professional opinion. It sounds like she acted very unprofessionally, to say the least. I’ve heard others describe similar experiences and it makes me angry and sad. Clearly this psychiatrist had her mind made up from the beginning and you didn’t have a chance of convincing her otherwise. The first person I talked to about getting a diagnosis had a similar opinion and literally asked me what I wanted it for (like I was a complete idiot for thinking there could be any good reason and this was someone who advertised as a specialist in adult ASD diagnosis, WTF, IDK).

              The stereotypical notions your psychiatrist has of adult ASD are just pathetic and misguided and outdated and . . . ugh. I know you have limited options for pursuing a diagnosis and I’m so sorry that what’s available to you turned out to be a total worst case scenario. I wish I had something more positive to say other than we’re here and support you and this one person’s ignorance doesn’t invalidate who you are and what you want. Wanting to learn more about yourself is a totally valid reason for seeking a diagnosis and wanting to pursue lifestyle changes is a valid strategy. Please don’t give up on what you’re after, even if things are looking really bleak right now.

            4. Thank you, so much for the support. Sincerely, every time she brought up everything that I “shouldn’t be able to do” were I autistic, when she questioned the ability of an autistic person to mother, I just steeled myself inside, and thought of your blog. YES. Yes, autistic people CAN do those things. It is hard to believe that you, and so many others, have had similar experiences. Why?? It doesn’t make any sense at all.

              I think I am at the point where, I’m accepting that I’ve gone as far as I can towards diagnosis for now. It will have to be tabled, and pursued again in a couple of years. Hopefully, then, things will be more stable, and I may even live in a different area, and I will have many more resources. And better ones.

              I am going to stick with my therapist, who I love. She has at least worked with children with Asperger’s at one point, early in her career, and is very personable. She does seem interested in, whether it is due to autism or not (since I don’t have the diagnosis) listening to what I deal with day to day, and finding ways for me to cope better, finding resources that work for ME.

              I’ve been building up the courage to go back into that building, since it is the same building where my therapist is. I know myself, and that it’s going to be hard. I’m dreading it all ready. But, having your support here, it helps. I can just repeat to myself, “I am NOT the one in the wrong here.”

              1. Hopefully, in time, the professionals will all catch up with the reality on the ground. The person who diagnosed me was well informed about adult characteristics and even recommended some books by autistic women for me to check out and shared a Powerpoint presentation about women and ASD from a seminar he’d attended. So there are good people out there, but they seem to be few and far between.

                It sounds like setting aside the question of diagnosis and instead working on the practical stuff with your therapist is a good strategy right now. Ultimately a big part of getting a diagnosis is having the right assumption to work from in therapy or personal improvement. You could “secretly” do that by raising topics of interest with your therapist and kind of guiding things in the direction you most need to go. I know that the peace of mind aspect of it is huge too, but damaging your self-esteem in the process is probably counterproductive!

                Good luck with steeling yourself to go back. Try to think about how much you like your therapist and the good that can come from continuing to see her. Also, reward yourself when you do it! I shamelessly bribe myself with cupcakes and cheeseburgers for doing hard stuff. 🙂

            5. You know, in your case I might even be tempted to take a little revenge. Maybe flap very obviously if I accidentally run into her when I go to see the other person. It’s such a pity that the chances of that happening are so slim. I’d love to see her face when confronted with a loud hands flappy “depressed” person. Flap flap flap. Go away. Just seeing your face makes me want to self-soothe. Flap.

            6. That is a fantastic solution! Ha! Although, flapping is just about the only stim that I don’t do. Rocking is actually my happy/excited/interested in something thing, oddly enough. I am constantly in motion in some way, though, and I’m sure there is something I could work out. You know, while I’m wearing my sunglasses indoors, rubbing my face, sitting with my feet up on my chair, with my knee moving from side to side. Except, who knows? She may just roll her eyes and assume that I learned about autism enough to fake it. Then again, who cares? How I go about my life isn’t about her. 🙂

            7. I think hand flapping is interesting even though I don’t seem to have a predisposition for it. I flap with my knees. But.

              Flapping is one of those things that has two completely opposite meanings in the autistic and the neurotypical world.

              Flapping in the autistic world is soothing, sensory-enhancing. For me it is a sign of recognition, of family. Even when it’s an anxiety stim (although I’ve rarely seen that), it’s meant to be calming and make you feel safe.

              Flapping in the neurotypical world means that you’re dismissing someone as unimportant or not listening to them. That’s part of why waiters don’t like it when you’re beckoning them to attend you.

              That’s why I thought it would be fun to flap at that psychiatrist. Dismissing her while soothing yourself. On purpose.

              Maybe it’s because I’m fluent in both English and Dutch. I like playing with two languages at the same time. 😛

            8. I love that! It’s so complex and thought out. Speaking two languages. In my languages, it says, “This is nice!” but what she hears is, “shove off!” 😀

              The flapping is a funny thing for me, too. I think that I must have done it as a kid, because I remember my mother complaining often that when I would run, it looked like I was “trying to fly away.” I didn’t remember for the longest time exactly what I did that she was complaining about, but, at some point, as a kid, I started holding my arms stiffly at my sides whenever I would run, or outright refusing to run. Now, I awkwardly consciously move my arms in what I guess is a normal way? but I have to think about it. I don’t know if I’ve ever really let myself run and just let my arms and hands do whatever they want to do! I wonder what would happen? ha!

              Rocking is another thing that’s weird for me. I do it when I’m really interested and engaged in something. I also do it when I’m stressed. But, only when I’m alone. It’s like there’s some internal block from who knows how far back that says, “NOPE. Not in the company of others!!” Sometimes, lately, I wish that it wasn’t like that, because it is such a soothing thing. I was so embarrassed for so long, no one in the world would have known that I rocked, but it was something that I’ve ALWAYS done. I wish that I didn’t have this weird block around so many of the things that, when I’m by myself, are so comforting.

              1. Hey Liz,
                I’m really sorry about your terrible experience with being diagnosed. It so unfair how she treated you, and so sad that medical professionals around the world until this day have little or no knowledge about autism, especially about AS. When I told my GP I would like to be diagnosed for AS or a highly functioning autism, she replied “But you’re not autistic to me, I mean, autism is a total lack of contact with the world.”. Not a clue about how AS works.
                I’ve been trying out psychotherapists since I was a teenager due to depression, anorexia and other unhappy stuff and was kind of satisfied only once. Few moths ago I decided to go try out another psychoterapist in a city I currently live; I just wanted to talk about my anxiety, phobias, social problems, obsessive routines, well, AS stuff actually, but I hadn’t linked them yet. As I walked in and started conversation, she asked me about reasons of my previous psychotherapies as a teenager. When I mentioned an eating disorder, she almost furiosly asked “Then why hadn’t you said that in the beginning?”. I replied “Because I don’t have any problem with eating now”. And I really don’t, I gobble food with overwhelming pleasure, but I’m still quite slim (must be genes, cause I don’t exercise at all). But she insisted that I look like one with the eating disorder and I had to swear endlessly, that I’m not. She didn’t seem convinced though. Next thing she “assured me” of, was that I don’t love my siblings. And that was because I used a phrase “they had” as I reffered to my parents having kids (each one of my siblings is from another marriage and both marriages broke up recently, so that’s why I used a past tense. Don’t know if you catch my meaning, cause I’m not sure how to express it well in english). So, half (!) of an hour passed, session was over, and this (along with tears I poured reliving some unpleasant memories for nothing) was everything I got. Of course I never went there again.

                1. Oh myyyyy. Your psychotherapist sounds just as bad as Liz’s. I want to flap her. And the thing with the eating disorder is uncannily like what I’m trying to tell my therapist people about depression. It’s so frustrating! I think the main thing that gives me strength is that every fight I fight might be educational. Hopefully the people after us will have to struggle less to be recognised. Hopefully.

                2. It’s really disappointing that so many therapists are eager to jump to conclusions and buttonhole people with labels from the first few minutes of the first session. Grrr. Also GPs who treat adults seem woefully poorly informed about ASD.

  5. *I spelled the url wrong on the comment the first time I put it in, could you delete/not approve that one and approve this one instead? Thanks!*

    And now there is the new DSM V. I just went in to talk to people and they told me that I would have had Aspergers but that doesn’t exist anymore (so I can’t have it), but I don’t have ASD (but they seemed to be confused about it and had to keep checking their book). (At least, I’m pretty sure that’s what they said…there had been a lot of talking and questions by that point). They didn’t really seem to say why I didn’t have ASD, though, although they said that I would qualify under the social skills and sensory issues. So they were just confusing.

    At least they were polite and generally respectful.
    (I’ve been to others that were neither… I went in about probably depression-related issues and I had come prepared with a letter describing the information and some of the things that I knew I wouldn’t be able to say verbally to a complete stranger… that it just wouldn’t have been possible… and the therapist refused to read the one page letter and told me that “this is talk therapy so if you aren’t going to talk you might as well leave” so I left and it took my boyfriend a long time to convince me to go back and see someone else)

    1. Deleted the other one. 🙂

      It’s odd that they said you qualify for an Asperger’s diagnosis but not ASD. I read (and I’m not sure if this in the DSM-5 or in some sort of accompanying guidelines) that anyone with an AS diagnosis under DSM-IV should automatically be given an ASD diagnosis under DSM-5 without having to be reevaluated. So that would imply that AS = ASD. Perhaps the new guidelines are creating uncertainty in diagnosing?

      Also, there are three qualifying categories under DSM-5 – you have to have current social communication and sensory impairments but you only have to have had the rigid/repetitive behaviors in childhood. So if you qualify under the first two and had traits like stimming, attachment to routine, etc, in childhood (or now), you should qualify for an ASD diagnosis.

      Sorry, I don’t mean to come across as back seat diagnosing. 🙂 It’s just frustrating that getting a diagnosis can seem like such a crapshoot. And that other therapist – ugh. What a horrible experience. I’m sorry you had to experience that.

      1. Well, luckily I mostly wanted my diagnosis for peace of mind related stuff. So I think I am going to just keep assuming I’m autistic (since I’ve had it confirmed that I’m generally on the right track, and also when I looked back at the new guidelines later with my mother, we realized a lot of the repetitive behaviors (especially verbal/speech patterns) that are example are things we didn’t bring up because they are so completely normal to our extended family we didn’t realize that they might count)

        (Also, luckily once I got convinced to go back to therapy, my next therapist was a very lovely, helpful woman.)

        1. It does sound like you’re autistic, regardless of the confusion on the part of the person who was diagnosing you. 🙂 I know what you mean about the peace of mind. That was my biggest reason for getting an evaluation and it’s made a big difference.

    2. “This is talk therapy.” I think you’re amazing and awesome for leaving actually. I would probably just have sat there and started beating myself up for not saying enough. It really is stunning how many of these so-called therapists are completely focused on TALKING. I’ve had my share of professionals not willing to look at letters or notes or even giving me the opportunity to TALK about my notes. It’s why I was so anxious about writing a 5 page letter for my latest diagnostic session, really had to keep telling myself to hand the damn thing over, not take “no” for an answer, don’t feel bad about walking out if they refuse to read it, this is important and I know I can’t say it. Silly people and all their sounds. As if only sounds have meaning.

  6. To expand on point 2 in the lower-cost alternatives section, I read somewhere that it’s possible to get an autism diagnosis for free if you participate in autism research from some universities (some require an existing diagnosis, but some will provide a free diagnosis for suspected autistics if they are willing to participate in the research).

    1. This is true in some cases. I actually tried this, but it turns out that qualifying for the studies can be pretty hard. I have a few surgical screws in my leg and that automatically disqualifies me from the MRIs that are required from most autism studies. 😦

      But it’s a possibility for someone who is looking for a no-cost alternative and can find a local study that will accept them.

  7. … As for a clinical diagnosis for myself, at this point in my life, I can see no benifit. I’m really wondering what to do with the information other than the personal relief I’ve found in knowing I’m perfectly normal in at least one circle of humanity. I become more satisified with self-diagnosis the more I read and identify.
    Otherwise, I’ve find myself imagining how any responses would dramatically differ from regular responses … ‘Mom! I cant believe you just SAID that … oh yeh. I forgot. You have a syndrome.’
    Or how ’bout the friend who cocks their brow at me failing to understand my adept sheer logic … because over due course of time, I have learned my friends well – they either ignore me completely, make irrational comments and/or shrug me off, or I find them staring into the abyss of logic squinting for some idea they can utilize. My sister-in-law has grown too loving to make me stand there wondering if I’ve stepped off in the proverbial cow pie again. She now frequently just says ‘you have a strange and unusual mind.’
    Far be it from me to give her a name for that definition.
    What would she say after I left her house … ‘Oh, by the way, that weird comment your aunt made, its ok. She has Aspergers… ‘
    My kids are non-responsive at this point. Are they thinking that I’m trying to excuse some of the ‘crazyness’ of their childhood? As usual, I am left standing trying to figure out what others are thinking. Never exactly sure where to step next. I’ve learned to move somewhat more cautiously with people, though in groups, I’m a complete mess. Maybe ambiguity IS best… how would this knowledge help others much anyway?
    I’m not quite sure I want others to know how I define me. It’s meant the world to me since I discovered this – but I dont want or need an ‘excuse’ to be who I am.
    I think I like just being the ‘off-beat, creative mind, who is occasionally brash, blunt to a fault . . . people have said upon meeting me things like, ‘I know exactly where I stand with you – you don’t put on a front – You’re just you.’ I prefer to interpret these comments as compliments.
    I see no apparent reason to add a disclaimer to my interactions with the few close people in my life, and certainly not to aquaintences . . .

  8. I am awaiting my first ever appointment with a psychologist my family doctor referred me to. I am looking forward to it — however after reading some of your horror stories with bad so-called ‘professionals’ I’m a bit worried mine’s going to be like that! I hope my doctor referred me to someone who diagnoses adults.

    I didn’t read all the comments but I don’t think there were any commenters from Canada? I’m in Ontario, and I simply asked my doctor to refer me – he didn’t question it or anything – I just said “I have reason to believe I have Asperger’s” and he explained that it’s on the autism spectrum and that yes, he could refer me to someone. Easy peasy.

    Now I just hope I like who he referred me to!

    My reason is mostly #4. Well a bit of #1 as well. I used to work but I just can’t handle it anymore. I feel I’m getting worse with age, not better.

    1. I hope it goes well for you. Can you do some research online about the person you’ve been referred to? The stories I’ve heard from people are all over the map–from great to miserable with a lot of variation in between so it’s impossible to know in advance what you might experience at your appointment. It can be helpful to prepare well (make notes about your traits and what you’d like to talk about) and be ready to advocate for yourself is necessary. Good luck with it and let us know how it goes.

  9. I would LOVE a proper diagnosis just for the confirmation, but I’m very discouraged about the hassle. It took over six months and seven doctors (and three counties) to find one to admit to a minor hormonal problem that had been driving me nuts for several years. But something like Asperger’s that can’t be proven with a simple blood test? With my luck, it’ll be six decades and seventy doctors!

  10. I went to that site “pathfinders for autism” and put in my zip code and ticked “getting diagnosed” and selected the “100 miles” option as suggested… and got back “No Results”. 😦 Switched it to “any distance” and found the first one is over 175 miles away. And I didn’t even specify “adult” – that is just how far one must go to get anyone diagnosed if they live in my part of NY I guess… and they all only mention children. *sigh*

  11. Miss Cynthia, I am 63 years old (male) and have come to think I have Asperger’s. I am having a difficult time locating someone nearby where I live (Dallas, TX). I went to the web site you provided and the only folks mentioned are all in the D.C./Maryland/Northern Virginia area! Any suggestions on how I can locate someone closer?

    1. Miss Cynthia, dummy me failed to make it clear — I am looking for someone to test me for Asperger’s akin to what Dr. K did for you. Sorry to be unclear the first time.

  12. In the UK the NHS is now required to provide adult ASD diagnosis services. This often requires a referal from a GP, but in some areas self referal is available. I (and some other family members including a teacher at a specialist autism school) have suspected for years that I may be aspie. I have looked into diagnosis previously, but couldn’t face up to the process. Having just discovered I can self refer in my area I have done so.
    I would encourage anyone in the UK who feels they want a professional diagnosis to do some research. A good place to start is this National Autistic Society guide:

  13. I’m a 15 year old female and I think I might have autism. I’m scared to talk to my mom about it because she won’t take me to a professional or even consider that I could be autistic. I’ve had problems in the past and she never did anything to help me when I came to her, instead she made me feel like I was an idiot. I don’t know what to do or who to go to. Do you have any advice to give me?

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