The RAADS-14 is a shortened version of the 80-question RAADS-R autism screening test. The 14-question RAADS-14 is intended to be a quick screening tool for clinicians, much like the AQ-10.
Unlike the AQ-10, however, the RAADS-14 is positioned by its creators for use in outpatient psychiatric screening. The validation study for the RAADS-14 was conducted on people who had a pre-existing diagnosis of autism, ADHD, anxiety disorder, psychotic disorder, borderline personality disorder, or mood disorder.
The goal of the study appears to be positioning the RAADS-14 as a front line tool for differentiating between autism and other psychiatric diagnoses whose traits might make an autism diagnosis in adults more difficult.
As with other shortened versions of screening instruments, the creators attempted to choose questions representative of the lengthier test. A pilot version was created by Swedish researchers using 18 questions distributed proportionately across the 4 domains of the RAADS-R (language, social relatedness, sensory-motor and circumscribed interests). After testing, four questions were dropped because they failed to accurately discriminate between autism and other psychiatric diagnoses.
The resulting 14 questions are organized into 3 domains: mentalizing deficits, sensory reactivity, and social anxiety. You can see which questions belong to which domain here. Honestly, the way these categories are named feels like a step backwards. The domains for the RAADS-R have fairly generic names while these new domains feel judgmental in a negative way.
In particular, mentalizing deficits groups together dubiously related traits and assumes they occur due to difficulty with perspective taking (or theory of mind*, mentalizing, empathy, etc.). Things like attachment to routine and knowing when it’s my turn to talk have little to do with my ability to understand what other people are thinking. Grouping these traits together under a mentalizing heading indicates a lack of insight into why they happen. For example, questions 1, 4, 9, 11 and 13 are primarily related to difficulties with pragmatics (social use of language), including reading nonverbal cues and being able to detect subtle nuances of prosody.
The social anxiety domain has a similar weakness–the framing of autistic traits as pathological rather than rooted in neurological differences. I don’t have difficulty making small talk because I have social anxiety. I have difficulty making small talk because I think it’s pointless, boring and confusing. Making friends, socializing, and working in groups are all difficult for similar reasons. I struggle with the practical and technical aspects of these things–and sometimes that leads to anxiety. But anxiety is not the cause of my difficulties. (All of this is alluded to in the study discussion, so it’s perplexing why the domain is named “social anxiety” instead of the more neutral “social relatedness” classification used in the RAADS-R domains.)
The previous two paragraphs may seem nitpicky to some, but the way we talk about autistic traits can significantly contribute to stigma, especially in an academic context where those who read the study and use the screening instrument will come in contact with many autistic people and their families.
Like the write-up I did last week on the revised Aspie Quiz, I’ve focused here on elements of the RAADS-14 that are different from the RAADS-R. For detailed information about the types of questions, the scoring system, and the pros and cons of the RAADS tests in general, please check out the RAADS-R Take a Test Tuesday post. (Also, it’s important to note that while the RAADS-14 uses the RAADS-R questions, answer choices, and scoring method, it was developed by a different team of researchers.)
Taking the Test
You can take the RAADS-14 at Psych Central.
Like the 80 question version, the shortened version asks you to rate each statement as (1) true now and when you were younger, (2) true only now, (3) true only when you were younger, or (4) never true. For the purposes of the test, “younger” is characterized as 16 and under.
Before you begin, the quiz asks you to supply an age and gender. Gender choices are restricted to the binary. I was able to successfully submit the test and get a score without filling in any of this information so feel free to skip it if you prefer.
The 14 questions are all on one page and take a couple of minutes to complete. When you’re done, click the “Score My Autism Screening Quiz”. You’ll be taken to a new page where you’ll see a single numerical score.
Scoring the Test
I scored a 39, having ticked the box for true now and when I was younger for all of the questions but two (and one of those was the small talk question, in which a “never” answer scores positive). In looking at the validation study of the RAADS-14, it’s interesting to see that 39 is the most common score among those with a pre-existing diagnosis of autism.
I’m curious to see who else gets a 39 and would love to know which question you didn’t answer positively. For me, the reason I didn’t answer the painful noises question positively is because I don’t actually cover my ears to block out noises, though I do find some noises almost unbearable and impossible to mentally block out. If the question had been worded more broadly, I probably would have checked the “true now and when I was younger” box. But my auditory sensitivities aren’t as severe as the question implies, so I check “never true”.
There are three scoring categories given on the results page:
- 31 & up Autism found
- 14 – 30 Autism likely
- 0 – 13 No autism symptoms
It’s potentially confusing that on one hand the site repeatedly states that the quiz is not a diagnostic tool and on the other hand a score of 31 and higher is graded as “autism found”. I assume the outcome wording was chosen by Psych Central. More accurate descriptors would be “unlikely”, “likely” and “very likely”.
The academic paper discussing the RAADS-14 positions the test as a psychiatric outpatient screening tool, in situations where comorbid conditions might make diagnosis difficult. The study concluded that the RAADS-14 identified most autistic patients while excluding approximately 50% of non-autistic patients.
One interesting thing to note about the cutoff score of 14, is that autistic males in the validation study had a median score of 30 and autistic females had a median score of 34. Both males and females with ADHD had a median score of 15. If you look at the scores charted by diagnosis, you’ll see that a significant number of people with ADHD scored above the cutoff of 14. This seems to indicate that there is a great deal of overlap between autism and ADHD for the particular traits that the RAADS-14 focuses on or that some of the participants with an ADHD diagnosis had been misdiagnosed. The curious part is that the RAADS-14 doesn’t have any questions that directly address executive functioning, which is where the main overlap between autism and ADHD usually lies.
The Bottom Line
The RAADS-14 is a good alternative to the AQ-10 as a brief screening instrument, though its more complex question structure may make it harder for some people to accurately complete in a short time frame. The move toward developing a differential screening instrument for psychiatric patients is much needed.
A/N: Thank you to Nat (@quarridors) for the heads up about this test and for locating the academic paper about it.
* If there was any doubt about how the authors of the study came up with the domain grouping theory, it was quickly erased when I got the “Gender Differences” section of the discussion where they promote the extreme male brain theory and break down ToM capabilities along the exact same gender lines as Simon Baron-Cohen’s studies.
59 thoughts on “Taking the RAADS-14”
Reblogged this on Tell It Once And For Autism.
Well I got 36 but I found some of the questions difficult to provide a definitive answer for (strange that). Mainly because I can’t remember if they applied when I was young. The one about getting upset when things change – it didn’t apply as such to my childhood because I never felt as if I had a choice or control over my life. My mother was in control (and had to have things the way she wanted!). But now my life is my own I get seriously stressed. So I can only answer for now.
I think I might try the long version though 🙂
I got 39 too. I am still too new at this to comment further.
My score was 42. I found the questions easier to answer than last week’s Autism Quiz because the wording was broad, unlike the Autism Quiz which used specific examples of behavior. I guess it also helps that I have little difficulty recalling how I was during my childhood.
I’ve got 36 too. I found some of the questions confusing.
Especially with the textures, which applies only to things I eat for me… (although, does applying eye shadow count?)
My partner got 22. He is not NT, but I don’t think he is autistic.
I scored 30. Quite a lot of these scores where I’d have said definite current yes before diagnosis are now more borderline or a no for the present because I have coping strategies. Everything was at least yes in childhood (except the one that’s backwards).
I got 33, but I’ll be honest that I wasn’t very satisfied with many of the questions. I think as a child, I was oblivious in many aspects to social conduct, so I don’t remember if what I did was “normal” or not. To answer them, I had to think backwards from how I think today and see if I thought the same way as a child. Not the greatest test ever. I would’ve liked to be able to explain why I chose what I did!
I scored 33.
I got 39 too. I answered true and when I was younger to every question except two:
*I can make small chat with people I put never true because while i CAN it take such a toll that really I have only trained myself to do so- I felt the options sucked because I would have rather put “rarely true” or “can rise to the occasion:)”
*When listening to someone I have a hard time telling when its my turn….that is never true for me. I have expertly learned how to tell to compensate for other verbal issues ect…So that is how I scored 39 but I didn’t like the clear black and white of the test at all. The options sort of sucked.
“can rise to the occasion” should totally be an option on these tests.
Ideally, there would be an option for “I’ve learned to” or “I have coping strategies in place to compensate” as Nat pointed out up above.
I dislike the fact that they don’t have “occasionally true” or “I don’t know” options. Because with several of those questions, I genuinely didn’t know whether it was true or not. And when I say that, I don’t mean that I had some idea what was true and could make a guess — I mean I had no idea whatsoever. So I just had to pick an answer at random. Also, I think it’s important to have an “occasionally true” option because I think whether or not something happens all the time or only occasionally is a significant difference and should be accounted for. I mean, I found myself answering “never true” when something actually happened rarely, or “true” when it happened more than rarely, but still only occasionally.
One thing that bothers me about autism screening questionnaires like this one is that they ask you directly whether you have trouble understanding what other people are feeling. The thing is, for years, I was under the impression that I didn’t have trouble figuring this out, because I had never asked anyone to confirm whether they were feeling what I thought they were feeling, so it never occurred to me that I was getting wrong. I did eventually figure out that I had trouble reading other people’s emotions (how I figured this out is complicated so I won’t get into details), but initially, I didn’t realize this. So when I’d take autism screening tests online and they’d ask questions like that, I’d answer them incorrectly. I can’t be the only autistic person who did this. I think a better thing to do would be to ask questions that determine whether the person has trouble guessing people’s emotions without doing so directly — I mean, I don’t know how you’d do that, but that’s something the people who create tests like this should be thinking about. Another question that I’ve always had trouble answering on autism questionnaires is the one about whether you focus on small details or the general idea. I have no clue how to answer this. I genuinely do not know whether or focus on small details or on the general idea. Because I don’t really know what counts as “the general idea” so I couldn’t tell you whether I’m good at seeing it, or not. I think, again, asking questions that indirectly determine whether someone can do this, rather than questions that directly ask whether you can do this, is what should happen on tests like these.
Some final thoughts on the test: I didn’t like how, in the write-up that came with the results, they referred to Asperger’s as being a “milder” form of autism. I was diagnosed with Asperger’s and I don’t see my autism is being “milder” than autistic people who don’t have an Asperger’s diagnosis. I can actually relate to a lot of the stuff people who were diagnosed with so-called “classical” autism experience. In fact, when I was a kid, in the 1980s, several people assumed that I was autistic. If I was recognizably autistic in a time when people viewed autism as being more “severe”, how then can my autism just be “mild”? I got an Asperger’s diagnosis because I didn’t have a speech delay, not because my autism is “mild.”
So when I’d take autism screening tests online and they’d ask questions like that, I’d answer them incorrectly. I can’t be the only autistic person who did this.
You’re not. I did it for years too. Some of the tests have questions worded as “other people say that I _______” and such, which can be helpful in getting you to think about it in terms of an objective view or perhaps to ask someone else (if anyone applicable is handy) for input.
I was diagnosed with Asperger’s and I don’t see my autism is being “milder” than autistic people who don’t have an Asperger’s diagnosis.
You’re right, their wording is nonsense. I actually didn’t even read the accompanying text so thank you for pointing that out.
Cynthia and all others, sorry for the following holiday-induced sentiment with only a superficial connection to the RAADS-14, alt-hough largely inspired by the previous post on the Aspie Quiz. Lately, in another blog, I came across a young lady writing that even after her diagnosis she cannot see a place for herself in a sort of ‘new family’ or ‘tribe’ since also Aspies are as different to each other as to any NT. Yet, I see unity in difference, unity through our strongly individual personalities, to put it mildly. When re-reading the latest comments a metaphorical picture (ugh) developed in my mind that may bring together both points of view.
Alone in many ways, each of us is roaming the sometimes dangerous, sometimes puzzling wilderness of a world dominated by the NT peoples. The compass is inaccurate (or the GPS-signal weak 🙂 ). But sometimes at a clearing, a group of us meets around a campfire, telling stories of adventure, sharing new tricks for finding paths through the jungle and where to find fresh water. Next morning we set out again in different directions. A common way of life but not together. The folk of the villages never could understand what we are doing out there. Sometimes forcibly, they try to make us adopt their rules and habits. But every year we get a little better at explaining why we must stay free. Eventually we may coexist in peace and mutual acceptance.
Now guess, who in this picture keeps the fire going that I found in this wood? I wish you all a warm and safe place to spend the following days. Or to successfully come through this period and feel comfort soon thereafter.
Love your comment Ernest – it’s so true 🙂
Thank you, I love that image of us gathering and then going off again. The campfire feels cozy indeed! 🌅
I scored 40. I agree with palsley’s comments about having sometimes type options – I’m not quite as black and white as they seem to think.
I scored 40. I answered true now but not when I was younger for I can chat and make small talk. I answered this because I’ve learned ways to manage having to do this sort of chat. It does rely on the other person though, and it is scripted and practiced. I don’t know if this kind of work around is being able to chat or not. I suppose it doesn’t matter, I still scored in the autistic bracket. It appears there are enough questions to accommodate a few confused answers. It is just a simple screening test, and would be used in conjunction with other tests or interviews, not detailed information for diagnosis so it doesn’t need to be more in depth.
I initially thought “why does it matter what they label the categories?” But I see your point of language potentially colouring the views of researchers/clinicians using the test, so language does matter.
Hi Cynthia – I didn’t express myself very well in my comment above so please can you delete it? I know what I was trying to say but I don’t think I got it into the correct words and it’s potentially giving the wrong impression or meaning. I don’t want to annoy/upset anyone because of my crappy writing and word finding skills. Sorry 😦
I haven’t been commenting recently because I can’t seem to formulate replies properly. After this attempt I think I’d better stick to just reading for a while!
But I want you to know I am still reading and finding your posts interesting and thought provoking, I’m just not finding “spoons” to comment.
I think you made sense just fine 🙂 And most people on here tend not to (or not so as you’d notice) take offence anyway, not about this sort of thing. Personally I always think I’m making perfect sense – it’s only when I go back and read it that I think ‘mmmm, maybe that doesn’t exactly mean what was going through my brain’. It would be easier if we could take a snapshot of our brains and post it instead (well some bits of our brains – there are parts that are strictly for my enjoyment only!)
I can kind of manage small talk now because I’ve learnt – even if it doesn’t go much further than the weather! It’s not easy and it doesn’t always happen or last long – but there wasn’t a tick box for that 🙂
That’s exactly what happened. I was looking at the post again today and thought hmm, that’s isn’t saying what I thought I wrote.
I think I make perfect sense too, at least while it’s still inside my head. It’s only on the way out that things get a bit kerfluey 🙂
And you’re right, this is a “safe place” where people don’t get judgey, and I really love that.
I’m sorry you’re having a rough time lately. Your comment seemed fine to me. I hope it wasn’t me lack a reply that made you uncertain. I only replied to a few comments because I was so short on words.
No it wasn’t you. I just read it back as different from what I’d intended to write.
I wonder where all the words have gone?
Happy Christmas (if you celebrate it)
Happy Christmas to you too!
Oops, hit send too quick on mobile.
Maybe the words are hibernating for the winter? I can completely understand that feeling and the frustration that comes with it. I’ve decided to look at the comments here as more of a conversation, something that’s free flowing and loosely structured. Otherwise, if I came back and reread my replies I’d likely want to delete most of them I suspect.
… HAD to stop in for a few moments this morning while waiting for the last customer to come up their item today …
So JK, I understood you, & Paisley, and JK, I too have ‘learned’ ‘scripted chit-chat’
Is it just me, or have you come to realize a rather ‘robotic’ feeling in that sort of rote, ‘weather’, smile, greet thing??
I know a good many people where I live, ‘know’ as in I can not tell you most of their names, but I see them around repetatively in places we all frequent – more people know me than me them bc they always say ‘Hey, your the lady who paints signs’
I am apparently SO good at the ‘chit-chat’ charade, people are always speaking to me.
I also learned as a kid, working for my mom, that youre supposed to smile a lot and not talk about yourself.
(read Dale Carnegie also)
Apparently, people are drawn to smiling faces, and trying to show genuine interest in others.
I try to never let people know what all Im really thinking (like staring at texture, colours, taking in.sounds, running my mental projector & rolex of images of every word thats said, thinking of every related thing & teying to decide/wondering if I should mention a particular interesting related thing- but no, bc it would be outside the bounds of ‘small talk’, all this while also thinking side thoughts (usually about some art I could create related to & inspired by light, colour, texture, on or around this person) and being VERY cognizant of ASKING first if I really want to touch a item of their clothing or their hair (usually must refrain from this bc it is also outside the boundary of ‘small talk’, and all this info is going on in my head, I am also prepared for the moment when it can be done – when the first is done pumping gas, or checking out of the grocer, or gets a phone call, or another person walks up –
At the end of a day where I’ve had a lot of errands & therefore seen a lot of
people & had to restrain my words & actions, & act as a person who can engage in small talk, combined with the energetic smiling & mundane drivel – I come back home and collapse physically & mentally.
Also, there is a rather regular occurance of people I run into who say things like I saw you the other day, standing in line, working at___, and waved, but you were just looking straight ahead…
as if, we’re also expected to look for & seek out people to wave at?
I sincerely wonder what IS in the mind of most people … sometimes – well, most of the time, I am really disgusted with their lack of depth and ability to ‘see’ things with their mind, or lack the ability to imagine.
I am now (with my knew awareness) much more interested in what IS in the brain of an average NT thinker – at this point ‘grey matter’ seems quite literally the answer.
I keep seeing ‘Patrick the Star’ on Spongebob. Just drooling.
I feel NT thinkers are the people who need a ‘diagnosis’ … who are lacking in mental capacity, and over-infused with largely useless emotion.
While I may sound phoney & a horrible mean person (bc Ive tried to discuss these things with a few people)
I am not being mean, I’m just analyzing to.understand (but of course all of US here get that)
1. This test CAN be done on an iphone.
2. I took the long version before (scored in some high range – I ferget)
3. I scored 40
4. I agree with the concensus that some questions are inaccurately worded.
For example, what does EXTREMELY upset look like if a routine or activity is disrupted?
I am imobilized – like standing at a wall. I do not scream, cuss, or flail.
But it is an ‘upset’ to me …
So there is an example of the ambiguity of these things.
It would be much better if a person with Aspergers wrote these tests, rather than NT thinkers.
ANYway, Merry ChrisTmas again.
The truth for me is, were it not for learning the loving, compassionate, patient nature of Christ, which I can only hope to emmulate a little, I would indeed probably be a reclusive person.
Happy Holidays to all.
I scored 33. I said a whole lot more in my first attempt, but it disappeared when I hit the post button.
I got 40… I have similar thoughts to what you said about small talk. It’s not an anxiety thing (I do get anxious in certain situations, though not as much as when I was younger, but the small talk issue issue is different). The difference now is even though I still secretly think it’s pointless, boring, and a waste of time, I’ve learned that other people think it’s appropriate and necessary to “connect” with people (mainly on an acquaintance level, which I also think is pointless and draining, but I persevere with the hopes of the acquaintance either becoming closer or introducing me to someone better). It sounds callous in writing but I simply don’t have the energy for this stuff. However on the chatting/small talk one I chose that I do it now, because I do in fact do it now, and better than as I child since I’ve learned some conventions about how to respond and what things to say. It bumps along for short term interactions. My different point was the loud noises one. I suppose technically I don’t *have* to cover my ears but I still do so at times (usually with noise-cancelling headphones) when it all gets to be too much. It’s not just loud noises, it’s particularly annoying ones. Some loud noises are fine. When I had an MRI (which has loud clunking noises) I actually found the noise soothing… though it may have had to do with extreme sleep deprivation beforehand.
I don’t cover my ears either but other peoples’ loud noises (and even quiet noises if I’m not in the mood) drive me close to insanity.
I only scored 33. Twice
No seriously: What I found interesting was the comparison of results between the ‘full’ RAADS and this short version. In the long form I got 157 seven months ago and 171 when I redid it today. The threshold is 65. Am I really more Aspie in this test than in the RAADS-14, where the cutoff is 30? Can it be that one or the other of the tests introduces an unintended bias due to different weight on subcategories? Would love to hear from others whether they made similar observations. One reason for the divergent results in my case might be that I have almost no sensory problems (lucky me) but regarding social relatedness I’m quite a freak 😀
Another observation: Almost everywhere I could tick ‘now and then’ or ‘never’, without ‘when I was younger’ or ‘only now’. Over the last year I have rewritten my biography in the light of the new knowledge on Aspieness. Only then I realized that a lot of behavior patterns in my youth were far from ‘normal’ but consistent with how I see myself now. If I would have done the RAADS naively some years ago I would have come closer to NT values. Thus can the results vary to some extent from changes in self-concept?
I think the difference between the two tests (and I could be wrong) is that the longer one is more for identifying autism, and the shorter one is for distinguishing between autism and other possible conditions in patients already known to have something but not sure what yet. It looks like it’s mostly done through age of onset eg if all a person’s difficulties started in adulthood then they would most likely have an acquired disorder rather than a developmental disorder. Because of this, it doesn’t go into detail looking for information to support autism.
I agree with you about the weakness in this test. I didn’t know what I couldn’t do until relatively recently so probably wouldn’t have answered correctly. But I did always have a sense of not fitting in, being different, and being kind of behind everyone else. Even when I was very young.
Hopefully this test is only used by responsible clinicians along with many other sources of information.
Ah, thank you! This makes a lot of sense – quick screen for ‘acquired’ versus ‘always there’ traits with RAADS-14 and from there to the full RAADS only if necessary. Since these are not the only questions a health professional will ask anyway I hope not too much harm can be done.
Sometimes I wonder if psychiatrists and other specialists are aware of how much most of us know about ASD tests and symptoms before seeking an ‘official’ diagnosis. Which is a typical symptom in itself. 🙂 Would that change their approach?
your comment about writing your biography was interesting to me because I started my bio (or really memiors) for my daughters about two years ago …
It has often been difficult … because writing about my childhood & other experiences (I’m up age 19, sharing events just before the birth of my oldest child)
Anyway, remembering these events and issues of my life – was one thing, but in actually writing & sharing, I relived so much all over again, and this was what really initiated my quest for answers about myself …
It seems I have spent the majority of my life now VERY tensely controlled, walking on egg-shells, trying VERY hard to say & do things ‘right’ – trying to study & watch people who seem popular with others – and attempting to emulate them – and STILL falling flat on my face.
My writing reminded me over & over how ill fitting I have always been.
I read & re-read things I wrote and actually broke down & cried so many times … because, perhaps I had forced myself to forget these confusing issues and seemingly non-stop reprimands … I always thought my issues were about being adopted, and that issue did play a role, but there were so many personality traits emerging in particular events (like school & lack of friends, being bullied, etc) from such an early age that made me remember I was simply very, very different . . .
I had read psycology books and knew I did not fit any descriptions there – I had seen the word ‘autism’ and like most believed it meant something very different or extreme. I know 2 autistic people – so I never studied it – what a kind of horrible thing – I KNOW two autistic people – I SHOULD HAVE studied it. I made an assumption about autism based on what I saw & was told by the parents of these two people. ‘Assuming’ is something I almost NEVER do – and in that case, thankfully, I did eventually search for fact.
My own writing, combined with several other clues, comments, indirect reading, and even a couple of movies, led me to FINALLY google the word Asperger’s … I remember reading the basic info and thinking – this is amazing – this thing is describing how I think – that first test I took was the long version of our topic here – I was incredulous, stunned, relieved … And I was really quite accepting of it because in my entire life thus far, I never been able to answer others as to why I act/dont act – why I do/dont do – why I think/dont think ‘right’ …
The Asperger’s is the only thing I have ever seen or read that describes me accurately.
I am so thankful to know.
And I also am noticing, I am much more relaxed. I am creating a LOT more art than I have in years because I dont care if people think its weird and therefore I’M weird – I finally accepted the FACT that no matter
how HARD I try, I am NEVER going to ‘fit’ socially or mentally. I also, am no longer tolerating reprimands, rebukes, or being treated like a child etc – and I am going to be more tolerant of the way others think, now that I realize that thinking ambigously, vagulely, and without imagination is actually a handicap . . .
And, Im looking forward to getting to the part if my memior/bio where I get to share this more indepth with my daughters.
MEANWHILE – my oldest & I DID have a conversation FINALLY – she was able to explain why she was cautious about discussing it, and I was able to address her thoughts accurately. It was great to finally know she had been given some insight into her strange mother.
Thank you! I am glad that you could make some sense of what I wrote. I can relate to so many things you describe. First example: both of us should have known better and look for an explanation earlier. I had to get almost sixty (!) to find out who I am. So many things to reconsider, to rewrite, first in mind, then by typing more than hundred pages, no end in sight.
Cynthia describes this sense-making process beautifully in her early posts, confirmed many times in other personal accounts, as you may have seen. Despite reading all that I went through the ‘classical’ steps. Relief first, followed by grief and depression – what might have been if I had known earlier … finally seeking professional confirmation (I’m somewhere in the middle)
You say, you are more relaxed now: same here. Almost a year after beginning the journey I feel at peace with my life. Like you, I allow myself to be more openly autistic, giving up efforts to fit into unrealistic expectations.
You write that you look forward to fully share your insights with your children some time soon. I was *so* lucky: my three adult daughters were so understanding! Especially the one who apparently is on the spectrum herself and struggles to come to terms with it. So you will believe that I wish you all the best for that difficult task. Maybe the final one before you can start enjoying a new life, free and confident at last.
Sign Lady, so glad you had a good conversation with your daughter! 💖
… on the subject of our children … I am now VERY interested to learn how any of my behaviours were assimilated by proxy in our kids …
I have seen nothing to prove Asperger’s is hereditary … but I admit, my research is not extensive – I’m still spending a lot of time assimilating all this about myself, and actually enjoying my mind in new ways … When all this euphoria, & contentment slows down, Im sure I will delve into more research…. (and yes, I too endured some depression)
The point is, children learn so much by example – learned behaviours …
I too have begun noticing some things in my kids, that I feel has made life thus far more difficult for them …
I am convinced the particular actions & responses I am seeing in them are not what would have come naturally to them with a ‘normal’ parent.
They have emulated some of my actions & responses. There has been a fair amount of ‘tension’ in both their lives (diffucult with single working mom) THEN additional difficulties I added with my behaviors – mostly frustration … as I have mentioned also, my severe lack of sympathy & empathy made me very logical & reasonable & factual.
But, I have disvovered much too late, a good mommy is sweet, un understanding, patient, affectionate …
I failed miserabley in all these areas and more.
Now, I recognize similar behaviours in my daughters that have had a profound affect on their relationships ..
I am very interested in researching, learning, understanding how much if this is the natural result of absent, dismissive fathers, and how much of it is a result of me …
We can certainly see a bleak outcome for any child dealing with such faulty parents – but my girls are also extremely strong, smart women …
Theres a lot left to learn about the children of autistic people …
Short comment on the genetics of ASD: I am a scientist working in the wider field of genetics myself (molecular cell biology of diseases). In my impression the evidence for a linkage between Aspergers and certain gene variants is increasing constantly but so far falling short of a ‘proof’. I do not want to flood you with references and links right away but could look up digestible sources if you want.
This does not all mean that I do not agree with your argument how much we can influence our children in a positive manner by example and guidance. But please do not discredit your efforts as a mother. Our children can be much more understanding that we gave them as much as we could than you believe. Cynthia wrote a lot on that topic herself. Maybe we need to explain many aspects of our nature. But still … it is *not* our fault that we are as we are, it is not our choice. We try hard. Harder as others in fact.
Thank you Ernest, that. Was so well said. I know I have been my own worst critic. We sat down with our kids and their significant others on Friday evening. They were wonderful and supportive. I was so full of judgement and blame for myself that being an Aspie made be not a good mother. Likewise judging myself for being an Aspie and feeling somehow guilty or shamed for possibly passing this on, this being the struggles to fit in, function in the world and they let me know in no uncertain terms that I did a great job. It was a huge weight off my shoulders. I want the very best for them. I’m so looking forward to growing together as we each explore what it means for me to be an Aspie. All of the kids, and their partners – spouses chimed in to support, cheer me on and laugh with me. It was wonderful and I am so greatful to this community for being part of my support network so that I could come to them feeling centered and empowered! Thank you! 💖
Thanks to you, too ! You made me relive my experiences half a year ago. I am so glad to read your description of events 😀 Apparently happens (frequently at least) once we are not too puzzled anymore about our differences and can start to *explain*.
My three daughters, each in a one-on-one situation independently (!) assured me that to them I was reliable, honest, setting an example and more. But strange 🙂 And that it never was a big deal for them. Even with my ex-wife six years after the divorce I am on very good terms again (X-mas dinner and all) because now she understands a part of what happened over the years.
Aspie life can be absolutely OK once we know to be one.
Thank you Ernest – I appreciate your encouragement in that area – I may seem to ‘beat my self up’ , but basically I am such a realist and so immersed in ‘fact’, I am able to disconnect my self from the emotion and simply state these things …
Tho, in this case, I DO love my daughters so much and have had many regrets & wishes that things would have been better …
It is very interesting how easily I can detach emotionally from many things and think extremely objectively.
Did you know many people will typically disallow completely honest observations?
Its very frustrating to try to have an indepth conversation to discuss your own faults with another person, OR theirs, with total objectivity … I have never known a human being to be capable of intospective discussions with me without them bringing irrational thought into the process.
(NOT alluding to your specific response) I’m simply pointing out
there is a difference in emotion and irrationality.
I can cry and regret things which is an accurate response to the facts.
It would be irrational for me to react with blaming my parents, or others, or breaking things, or using my regret as an excuse to ‘vent’ about something else.
I have always recognized my failure to communicate … no … I have always known my form of communication is not suitable for most people … I am often stunned to sit back and wonder how people fail to acknowledge factual data even if placed directly in front of them in a precise way … emotion will blind them to all evidence.
This is not to say I am Spock, void of emotion. If Im exhibiting an emotion, it is specifically about something – it can be defined specifically. It is not an irrational, indefinable tangent.
I never did well with my daughters therefore. (lol) Because they were extremely emotional and/or irrational (particularly in the teens) and can never specifically define their angsts.
AND, Ive seen the same behaviour in alleged normal adults … (merely inconvenient and largely avoidable UNLESS one is married to them, in.which case divorce is imminent & desirable)
MEANWHILE, do you have a reference or two to get me started on reading about the gene things …? ACTUALLYwould like to know more about learned behaviours – It would seem perfectly logical that impressionable children, from birth to teens would learn, emmulate, and develope certain behaviours until they are actually uncomfortable in lifestyle situations that deviate from their percieved ‘norm’.
For instance, a perfect example of this ‘discomfort’ is a girl who grows up in domestic violence – if the father degraded the mother in anyway, (verbally or physically) chances are she will never feel comfortable with a gentle man, or be attracted to one. It is more likely she will be drawn to an abusive type which feels ‘normal’ to her – this extremely simplistic example is to relate how this has nothing to do with genes or DNA – these are learned behaviours passed down from father to son etc which is emulated by children in their lifestyle & perpetuated to the next generation. Ive given a negative example – obviously, there are postive or healthy examples of this learned behaviour too
.. therefore, it seems likely and obvious to me that any given behaviors are passed down externally, by actions, not in the DNA.
THAT is what I want to read about; specifically pertaining to the learned behaviours of the neurotypical children of people with Asperger’s.
You make me walk on thin ice with this comment. 🙂 Cynthia forgive me / correct me based on your much larger knowledge base!
The common ground between mainstream geneticists and behavioral psychologists is nowadays (= nature versus nurture debate) roughly like this: starting as a newborn NT from a level of possibilities at ‘100’ (genes only at this stage) your childhood can add or diminish your potential about 25%. Specialists will kill me for such an imprecise approximation. Anyhow. This does not sound much *but* the ‘numbers’ can reach from 75 to 125! That leaves a huge impact for family life and education. Of course this is not true under abusive or traumatic conditions.
Continuing with ‘ASD genes’. This research is extremely challenging since apparently dozens of genes are involved, sometimes in combination, adding smaller or larger bits to our nature. Thus, the term ‘spectrum’ in ASD is no coincidence. In *the* study so far, (2013; methodologically very good), mutations in about 20 genes accounted for about 50% of cases of autism. This will not be the end.
A summary in a journalistic science journal can be found here:
The original article is tough reading as a whole, but abstract and introduction may be still digestible.
Most importantly, again, my impression on your role as mother. To put it differently this time: I was very much moved by your words, the *empathy* behind them, the grief you must be feeling, how deeply you crave for good relations with your daughters… If this is my reaction as a complete stranger then I firmly believe you *will* find a way to communi-cate all that to your daughters, and be it in written form like here or in the biography you mentioned in the very beginning.
All the best wishes for your difficult quest.
I have no idea what the genetic basis might be but I believe that most people can easily trace their autistic “lineage” back through several generations if they look hard enough. And the fact that it’s so hard to identify an “autism gene” is something I find very comforting. If it were easy, I suspect our numbers would already be shrinking, much like what has happened to those with Downs and other clearly identified genetic conditions that some/many parents find undesirable.
‘… most people can trace their autistic “lineage” back through several generations … ‘
An interesting point! For me it indirectly confirms that there must be multiple genes involved: I am a ‘first generation’ Aspie: My father stayed below the radar. He was an introvert in his social interactions, shying away from (groups of) people. My mother qualifies better, though still below the threshold, particularly in her ‘don’t leave the house’ attitude, wanting solitude after meeting people plus depression. Nowadays we laugh quite a bit on ‘me too’ discoveries. Both had several other characteristics I can identify upon looking back with knowledge on hundred possible symptoms.
Me, I have a recognizable mixture of inherited traits (*not* just introversion) from both, where by chance I got the right dosage to qualify as an Aspie with flying colors (albeit with few sensory issues). Next generation: one daughter doubts being on the spectrum but increasingly reflects on it; two daughters where I see nothing and a grandson of one NT daughter, aged three, where I am quite sure he crosses the line. His father is a shy and loveable introvert. I don’t go as far as to argue if my daughter felt attracted to him because of some oddities but …
Why this lengthy description? Because of the comments above. Just three days ago I came across another frightening (for us) scientific paper, on purpose no link this time, which showed what will be possible in terms of genetic analysis within a very few years. As you pointed out, it is more disturbing, what is already done, not only upon diagnosing Down’s syndrome. For parents, with ‘some” similarity of habits found in ASD, however: who can draw the border between potentially ‘severely affected child’ and ‘neurotypical enough’? Most likely nobody. Today. But never say never? The uneasy feeling persists. Are we an endangered species?
A somber note indeed. There cannot always be a smiley. With the new knowledge that this blog may find scientific use one day and as an indirect advocate I wanted to put these lines exactly here. Amid the ongoing exchange to this comment.
I think to some degree the genetic question is a race against time on both sides. Hopefully awareness about what it means to be autistic and especially to be an autistic adult will spread to a degree that when genetic testing is available, parents won’t feel compelled to take advantage of it. Probably wishful thinking, but without that, the future has the potential to be scary.
Your commenting here is very much an act of advocacy. In fact, just yesterday I read something on Tumblr that was a potent reminder of why those of us who choose to speak up need to keep doing it to whatever extent we are able: http://lysikan.tumblr.com/post/106147681470/you-dont-speak-for-low-functioning-autistics
Moved to tears? No: *proud* of Lysik’an and proud of being with her.
I felt the same and also inspired.
My score was a 40 also. It amuses me that the scale’s entry for scores 31 and up simply reads “Autism found” – to me that sounds like a video game achievement (“Autism found! Equip autism y/n?”), which makes me giggle.
Thanx Ernest for all kind words & info – am headed to read link.
Are we missing a valuable point? “The goal of the study appears to be positioning the RAADS-14 as a front line tool for differentiating between autism and other psychiatric diagnoses whose traits might make an autism diagnosis in adults more difficult.”
No matter what, mainstream healthcare can now use this tool that may begin to reveal autism, if not reveal us autistics to them very well, it will open the door of knowledge just a bit further for healthcare practitioners who remain largely autism ignorant. Isn’t this of some genuine usefulness?
Micheal I agree …
Ernest … youre right the info you sent was a tuff read … but I gleaned a lot of info and took notes – it will be a while before I’m able to access my notes – but here is a most simlplistic summary – these are the most important facts I gleaned from one of the links you sent:
There were 32 families tested.
The vague descriptions of the autistic members of each family indicates more severe autistic symptoms and IQ levels in the 70s. And furthermore, names several other syndromes, and even muscular Distrophy and epilepsy.
It seemed to be implying that there was evidence for about 1/3 of the group to have some genetic link
(but there were so many variants with these other medical issues/syndromes)
One of the final comments stated that some of these participants warrant mor comprehensive study to really isolate proof of gentetic links among family members …
Its sort of interesting (in spite if the extreme scientific jargon which would require me to spend several hours defining words & so forth, and in fact, my summary may be quite foolish given my lack of education in genetics or science of any kind)
What is more fascinating to me is learned behaviors that would be irrelevant to genes, or could possibley over-ride genetics if that is possible …
Meanwhile, I still have to read the other link you mentioned. ; )
” I struggle with the practical and technical aspects of these things–and sometimes that leads to anxiety. But anxiety is not the cause of my difficulties.”
Exactly! Thank you!
I scored a 37, 34, and 39 in that order. As many said, I’m not happy with the available answers. I got the 34 because I read what you said about not covering your ears and thought I don’t do that either, but then realized that I do, it just depends on the circumstances: What kind of noise is it? What other noises/smells/tactile sensations am I experiencing? What’s my level of stimulation when the noise happens? How sudden is the noise?
The same is true for the question about getting extremely upset when things suddenly change. What do they consider extremely upset? Do I have to have a meltdown or can I just be angry about it without outward manifestation? Who is dictating the change and how much do I care about the thing that’s changing?
Or maybe I’m over-thinking things. Or those are inappropriate questions. I don’t know.
I used to think I focused on the details of things without seeing the larger picture. I always use too much detail and can’t continue recounting an event until I remember if it happened on a Tuesday or Wednesday, even when I know it’s irrelevant to the story. It’s important to me, so I have to figure it out.
I saw a neuropsych recently, though, who said I get stuck looking at the overall picture and can’t suss out the details. Like in cleaning a room. I get stuck in how messy it is and can’t figure out where to start putting things away, so I just leave it. She’s right about that, so now I don’t know whether I focus on the details or the big picture. Or both. Or maybe neither. Or it depends, like everything else.
Actually, I’m confused about all things relative to me being autistic since that visit to the neuropsych. That’s why I stopped blogging a few months ago. I will go try to work things out on my blog and stop clogging your comments with my existential angst. 🙂
Existential angst is most welcome here! 🙂
I wonder if your room cleaning dilemma is just a simple executive function glitch. Planning and initiating can be really hard when your EF is goofy. I have a similar problem and need to remind myself that starting somewhere is preferable to starting nowhere and to just do anything to get started rather than trying to plan everything out in advance. It’s not ideal but often picking up stuff off the floor leads to putting away a few things leads to organizing a shelf leads to getting a load of laundry started, etc. And even if I get completely sidetracked into some other cleaning/organizing project, progress is being made somewhere.
And yes, I share your frustrations at the questions and how much interpretation can play into it.
your comments about your family gathering & conversation
about Asperger’s sounded wonderful.
I am so glad for you too.
Although I do not know how to insert a heart here … or a big thumbs up, please see them in your unique mind.
I got 42. I had to answer never true to ‘I can chat and make small talk with people’.
I scored 40. Like Alexforshaw, I found it easier to answer this one in part because the vague wording helped prevent me from getting stuck on definitions. I think my curve of “effort required to answer” as a function of “vagueness of question” would look like an inverted parabola – very specific questions are easy to answer, and very vague questions are easy to answer, but questions that are in between are tough because I get the feeling the asker wants a specific thing but I’m unable to reliably figure out what it is.
I’ve only recently discovered, through some friends who are also on the spectrum, that actually I am too, though I don’t know where exactly. I took the most recently posted Aspie Quiz 3.0 and got 168, and I took this one and got a 36, then the long one on the same site and got a 38, but…some of those questions were hard to quantify and the answering options were woefully lacking. I needed a sometimes or used to or whatever for a number of them! I’m just not sure whether or not it would be worth it to try and get a formal diagnosis.