There was a story on NPR years ago about a doctor that diagnoses Asperger’s in children. She and her husband were working through their martial problems and a thread of that led to the diagnosis that her husband had Asperger’s. She was shocked that it never occurred to her – even though that was her job.
My son. As I’ve told many people, “I’ve never met any kid who takes play so seriously.” Although his preferred method of play is to tell you what to do for him, and then repeatedly correct you as you do it, which is not great for my self-esteem. For a while all he wanted me to do was build cubes using cube numbers. So a cube of 1 cube blocks, followed by a cube of 8 cube blocks (2x2x2), followed by a cube of 27 cube blocks (3x3x3) up until we ran out of cubes (oh - and using a specific color sequence, and god help you if you found an extra orange cube after all the cubes were put together, then you have to take the cube apart and rebuild it to color specification, which means ROYGBIV order.) And the cubes are so horrible to put together and always falling apart that he was constantly upset about them not being perfect and I really wanted to throw those damned cubes through a window. He’s moved on to demanding that I measure numbers using a tape measure in very exact increments. I try to go along with it because I know he’s got enough demands on his behavior all day at school and therapy. At home he can just play how he likes.
My son’s autism has always been clear to clinicians. We knew it was autism before his diagnosis. By the age of three, he had a lot of the stereotyped behaviors, stimming, lack of imaginative play, sensory issues, language delay (mostly rote language and echolalia), gross and fine motor delay, difficulties with independent behaviors (dressing, feeding), feeding disorder. I mean, it’s a whole thing.
My son has made a lot of progress but I’ve settled into acceptance that none of this is ever going to resolve completely. He’s never going to be mistaken for a neurotypical person. And at this point in our lives, despite the challenges (and medical expenses), I don’t want him to be different. He’s an extraordinary person. He’s my sunshine. And with all the people who currently love him just as he is, I’m confident he will always find people who love him.
I think so much of the denial and rejection from parents stems from the fear that people won’t accept and love their child if they are X. But the thing is, they are going to be X no matter what. You can either make it easier or harder to cope with, but either way, that child is going to be different.
This is why I think the new “Support Levels” 1, 2, and 3 are actually a good idea. The OP, if autistic, would be an example of Level 1, Low Support Needed. My son, who requires hours of therapy every day but who is highly verbal and may one day eventually achieve some measure of independence, is currently Support Level 2. And your daughter would probably have been labeled Support Level 3. They are all autism, but they are also substantively different in the level of supports needed, and are thus likely to be experienced in very different ways. (Note: Support Levels can change over time. They are not fixed, not a prognosis. Just a description of what is in this moment.)
And of course, I am so very sorry for your loss. I appreciate you sharing here.
I think it would have to be. The more support an autistic person requires, the less likely they are going to be able to fake being like everyone else. I mask my ADHD all the time, but I had a friend in high school who absolutely could not, because the effects on her behavior were significant.
And a few years prior to that, I had helped a close friend through his own ADHD diagnosis. This was a friend of 20 years. He was describing all his problems and I asked him if he was still taking ADHD medication. He was like, “What? You think I have ADHD?” I was like, “I thought you knew!” So he went to get evaluated and sure enough. I would have mentioned it sooner if I had known he didn’t know.
But so many of these paradigms are for boys who behave in a very specific way and it’s harder for people and clinicians to recognize all the different ways something like this can present. Just as ADHD people have been told we can’t have ADHD if we have an advanced degree, or can’t have ADHD if we’re not hyperactive, autistic people have been told they can’t be autistic because they make good eye contact.
My husband says that whenever a client describes themselves as lazy or says that other people describe them as lazy, it’s a flag for him to screen for ADHD. So much of therapeutic work after diagnosis is dealing with the low self-concept of people with ADHD. Even for people who are very good at masking, there can be a feeling of low self-worth from just years and years of feeling like you’re doing it wrong.
I did this. I learned as a kid how to talk like a normal person, and did so well that it led me into customer service, made me a top salesman for the company I worked at, and today at my work in my career I connect easily to everyone and I am probably one of the better-known people at my agency. I have a strong social network all throughout my organization where many people know me, I get along with folks really well, treat everyone like a friend, people are generally very happy to see me and interact with me. I get people reaching out to me for help from across the state because they want to work with me even though they aren’t my responsibility.
None of that is natural. I had to teach myself how to do all of that out of desperation, more or less, because I couldn’t handle the extreme loneliness I felt as a kid that was so different than everyone else. I started doing it in junior high and kept at it through high school until I was very skilled at it at my post-school working age.
My wife is pretty sure I have ADHD (our daughter was diagnosed with it), and I dunno, I probably do if I am being objective about it. Maybe I also have autism.
I did that too. Especially when I lived on Guam and being white was a minority, which made me a target. Fortunately by that point I’d already developed my “act normal” persona. But yeah, for much of my young life I was bullied or harassed for being different and learned to not stand out.
…As an experiment I took an online test just now and it said I have a “borderline indication” of autism and “experience many typical signs of autism”. One thing that it pointed out is sensitivity to noises, which I definitely have (I always carry earplugs when I travel and often sleep with a noise machine or earplugs) and what’s really weird is that I have known very well that such a thing is a sign of autism but I never considered it was relevant to me.
I’m in my late 40s now, I’m not sure that getting a diagnosis for any non-neurotypical condition will make a difference at this age. I am who I am, my life is fine, I thing I’ve figured things out and I’m happy. But if I had a chance when I was young to get some help or guidance I think my life would have been a heck of a lot easier.
I hope it provides you some meaning, comfort, whatever to think this diagnosis might apply to you.
I think most people are weird in one or more ways. I generally try to be a good person and I generally achieve contentment, but I’m not particularly curious to assign any specific designation to my personal weirdness.
And, even persons with diagnosed conditions can still just be jerks.
I dunno - maybe when people accuse me of insensitivity or just general assholishness, it might be nice to say, “But you should reasonably accommodate my diagnosed pathology!” 
FTR, I do tend to talk with you the way I would someone autism. You seem to understand me better that way.
**>I think it would have to be. **
Oops, what I meant was that I was wondering whether masking is more common in men or more common in women.
I would hazard a guess that it’s more common in women than men because the way it presents in women, as I understand it, is a greater understanding of social rules than autistic men typically have, but a greater difficulty in implementing them. Keeping in mind women, in general, tend to place great emphasis on social skills, it may not be difficult for a young autistic girl to make friends, but you would see a harder time sustaining relationships over the long-term. Whereas in a boy (again, generalizing) they would never get to the friendship stage in the first place.
My husband sent me an interesting podcast about how autism can present in girls, I will have to go dig it up. One story I recall is that the autistic girl was walking in the woods with her parents and they stumbled across an old friend and her same-aged daughter, who they hadn’t seen in a long time. The autistic girl did not think to interact with the daughter. Afterward the parent said, “You should say hello when you meet people.” Flash forward a few days, they are at the grocery store and the daughter starts saying hello to ever person she sees in the grocery store. She is capable of grasping this rule, that you say hello to people, but not capable of understanding that this expected behavior is context-based. It doesn’t make sense to her why you would say hello in one situation and not the other.
It’s possible that there are many different ways to be autistic, and one way presents more commonly in boys than girls. This is a matter of some debate in scientific communities.
Sensory difficulties are often common in people with ADHD as well. I cringe like a cat when I’m in noisy spaces. Though my son’s sensory difficulties are far more extreme. Sensory sensitivities are part of the diagnostic criteria for autism but not for ADHD.
As an aside, you sound more socially adept than me so good on you for all that work paying off. If I’m with an extrovert or a good talker I do just fine. But put me with a somewhat socially awkward person and I don’t really know what to do to make the situation less awkward. I also have social anxiety that prevents me from introducing myself to new people. I recently started attending Zen services and introducing myself to people in the sangha has been a real pain. Last time I just stood there for ten minutes until I caught someone’s eye. And then everyone in that circle seemed socially awkward to me, and there was just me, trying to keep the conversation going, wondering if I said something wrong to make everyone so quiet. OTOH, if you’ve been practicing Zen for a long time, as many of these people no doubt had, you don’t tend to have much to say.
One thing my husband pointed out is that the internet is not so good for differential diagnosis. It can help you identify that there may be an issue, but not figure out if that issue is attributable to autism or social anxiety or something else. A really good therapist or psychologist should be able to look at the complete set of symptoms, history of childhood development, everything and consider all the different possibilities for what the issue might be, before providing a diagnosis. I have never been evaluated for autism before. I’m guessing if it were a possibility one of my eighteen therapists over the last twenty years would have mentioned it to me.
My husband on the other hand, I think he has a stronger case for autism, but not an ironclad one. The difficulties he has had seem to be more what is described in girls. He never had social problems as a kid, but starting from the time I met him, around age 18, I felt he needed to be whacked with a clue by four on more than one occasion. He seems incapable of figuring out when he’s making a situation awkward. This is a source of frustration in our relationship. He comes off as so judgmental at times when he insists that’s not how he means it. I also basically had to teach him how to sustain friendships. He did not talk to his friends or update them on his life as a matter of course, so I had to walk him through that skill.
And as far as “repetitive, restricted interest,” my husband has been obsessed with X-Men since the day I met him. He still listens to X-Men podcasts every morning, buys X-Men action figures, and talks about X-Men at every given opportunity. This morning I was looking for t-shirts for a pink Hello Kitty birthday party we are all attending, and he sent me a pink Gambit shirt. What part of Hello Kitty do you not understand?
Yup. My brother remarked a few days ago that he thought it was interesting that we both have a difficult time coping with getting our hands dirty (and in my case even wet with water), and I pointed out that’s probably because we both have ADHD and sensory issues are common.
Our parents probably didn’t enjoy this aspect of us very much because dirty or sticky hands often led to tears, but our mom did laugh and say she never worried about me getting dirty as a little kid because the last thing I wanted to do was make mudpies
Posted accidentally. Why doesn’t it allow deletion?!
Like other people have said, this is the result of combining autism and Aspergers diagnoses. There’s a huge difference, but the latter is still useful and instructive for many. Aspergers does not feature language delay, and sensory triggers can be very variable. I’m not particularly bothered by loud noises, but I cannot stand wearing ties, or many other types of confining clothes.
AFAIK it’s due to different interests. It’s possible to learn social rules and how to act by applying logic and memorisation, like normal people learn maths (but very much harder), but you have to be very motivated to do so. Men way more often seem to just not care enough to do it, and to be happy having few/no friends.
I think you miss the point. The point of such diagnosis isn’t so the world can accommodate a persons assholish behavior. It’s so that the person who is diagnosed can understand that they view the world in a way that is perhaps too rigid and inflexible and adjust their behavior accordingly.
The other thing is that as an adult, feel free to be as much of an asshole as you like. You just have to deal with the consequences. As a parent, I feel that part of my job is to try and raise my kids to not be assholes (at least…not the sort of assholes where there assholish behavior gets in the way of their goals).
To your point, my son who is highly functioning at “level 1” on the autism spectrum doesn’t really have any friends at school. But from what I can tell, the kids in his class seem like fucking idiots, many of which have real behavior problems. So maybe it’s not the worse thing in the world that he focuses his attention on stuff like computer programming. But that said, I also want to be sure he is comfortable around people showing basic common courtesy. When people say high to him, I try to teach them to look them in the eye and return their greeting.
I’m confused about the difference between masking and learning.
The “real” autism thing sort of amuses me. My son never really had all-consuming interests, for example, but a bajillion counselors, social workers, psychologists, doctors and his neurologist all have zero issue with saying he’s autistic. Science moves forward with new knowledge and study and sometimes Pluto ain’t a planet any longer, some dinosaurs had feathers and “autism” isn’t the same narrow definition it had in 1998. No one is worried that they won’t know what “sort” of ASD he has – that’s what the sheaf of testing reports is for.
Per the OP, when my son was diagnosed, I started thinking about myself and my own past. Both for the obvious “where did this come from?” thing and because you’re suddenly bombarded with a ton of info and, especially if your view on autism was “nonverbal severely impacted person” then there’s probably a ton of stuff you never thought about. I always had social issues as a kid, few friends, sensory issues, that generally weird “gifted” thing going on, various other stuff and, notably, stimmed like a madman. I could easily spend an hour in my room sitting on the floor rocking and humming to myself. You’d think this would be a red flag for someone (I used to do this in grade school!) but it was the 70s so I was just a weird-ass kid. To her credit, my mom has told me that I used to rock in my crib hard enough to leave little sawdust piles from the screws rubbing in their holes and she would cry assuming I was autistic but then I started reading and talking so she figured I couldn’t be. Again, a time of much more limited understanding about what autism was.
That’s assuming I am. If I was to bet, I’d say the safe money would be on me walking out with an ASD diagnosis but, after fifty-plus years, it doesn’t seem like something worth pursuing. I can’t imagine anyone telling me something I don’t already know about how to get by. So I wouldn’t say that I am on the spectrum (though, in spirit of the thread I’ll say I probably/might be) but understanding it helps clear up a lot of stuff and evaluate my current behavior and why stuff I think makes sense doesn’t seem to make sense to the people around me. Or vice versa.
I think it’s sort of the difference between learning to ride a bike and then being able to basically ride a bike on autopilot in typical bike situations versus learning how to ride a bike but needing to devote 80% of your attention to not falling over during the whole bike riding process and each time feels like a harrowing process to look like a normal bike riding human being.
Except riding a bike at least makes sense from a physics standpoint versus applying a million stupid, arbitrary and contradictory social rules on how to behave without coming across as a weirdo.
Yeah, I get that. I’ve just got a longstanding difficulty parsing between people who might have moods/personalities/tendencies that resemble some aspects of diagnosed pathologies, and people for whom those diagnoses are meaningful and beneficial. My son - on the shallow end of the ASD pool - said a while back that he avoids any mention of his diagnosis, because he knows far too many people who use that designation as an excuse for being fuckups and to demand special attention. Just one person’s view.
Also, it was wonderful when my son found ONE KID to be his friend. Both of them are now engineers and married.
My oldest grandkid is definitely “different.” I fully support that her parents are getting her all manner of assistance. But I also think my daughter goes further than I would to identify and point out ways in which her kid (and she) are different.
My personal preference - which the OP and anyone else are entirely free to differ from - woul dbe to say I have some autistic tendencies, or that I share some attributes with some people who are on the spectrum.
that sounds just like a build-up for a trick-question on some SAT or IQ test…
How old was SW when she first met her later husband and what is Jim Weasel’s name?
I guess that was unclear - not to each other.
Haha, this is me. With the addendum that at this point I have built up a lot of scripts with interacting with socially awkward people (both specific – “oh, J.'s kid does water polo and I’m going to file that away as something I can ask about when I talk to J.” – and general – “ask people where they’re from and then make a comment about whether I’ve been to that place or not; if so, mention something I liked about it, and if not, ask what I should visit if I did go visit”), but once I run out of the scripts or I get too tired to think of more scripts, it’s both of us standing around being awkward. I was just at a wedding and had this problem for a while until I had the thought to ask the person next to me about cooking (as we were remarking on the reception food). This led to her mentioning her adult daughter, at which point we started a discussion about daughters not listening to mothers, and that kept us busy through dessert 
Okay, this is what I really came in the thread to respond to. Unless your therapists specifically know about how autism tends to present in girls (which is still something that a lot of people don’t know about!), then… no, I don’t think they would have mentioned it to you. Especially given that you mask well so you probably don’t “come across” as neurodiverse. I am 99% sure I am on the spectrum, but I mask well and have studied social techniques quite a bit. I haven’t gone through as many therapists as you have, but no one in mental health has ever mentioned it to me either. And I know two other people who also had never had it mentioned to them until they started wondering themselves (in both cases also because they had an autistic child and started noticing similarities between their thought processes and the child’s thought processes). One of them looked into being evaluated and was formally diagnosed; the other has not been evaluated formally but now has it on her radar, which is also where I’m at.
I’m NOT saying that you are autistic, mind you. Your issues may well be caused “only” by ADHD and anxiety interacting with a gifted and extremely abusive childhood (which is already a lot!), and my guess from everything I’ve seen you write is that this probably accounts for it. But the single fact that your therapists haven’t mentioned it, to me, is not really very strong evidence that you aren’t autistic.
This. Not one of my many (though less than 18) therapists brought it up. Nor did any of my daughter’s teachers, counselors, therapists (and she has a graduate degree and licensure in marriage and family therapy!) note that she had ADHD although she now has a (self-instigated) professional diagnosis of same, and it seems obvious in retrospect. But here too, a gifted girl is unlikely to elicit any concerns at all, particularly because she was never the jittery misbehaving unmanageable male type of ADHD.
A lot of social rules make more sense from an evolutionary biology standpoint and/or a standpoint of “humans are tribal animals and a lot of what we do are rituals to strengthen our in-group tribes.” I usually have this in the back of my head whenever I’m trying to deconstruct a social rule or explain it to my kid. For example, I know kids (I was one of them) who don’t see the point in saying “hi” and “how are you” and things like that (in fact, my husband and his best friend in college used to assign numbers to ritual greetings like that, which I guess… may say something about them too) – but those are ritual ways to say “I see you, fellow human being, and I think of you as a human being and bear no ill-will towards you” without, well, actually having to say all those words.
…and the fact that I’ve deconstructed all this in these terms does, I realize, say something about me 
Yeah, I can’t remember if I’ve said this before, but my goal is that my kid knows she is autistic so that there are things she has to work on more than on other things, but that she doesn’t use it as an excuse or to demand special attention.
On the other hand, it’s been a lifesaver for us as she’s working on things like “yes, you need to make eye contact with people when you talk to them” so that people don’t think she hates them – because if you don’t know she’s autistic, her body language (not making eye contact, turning a little away from the person) would tend to suggest that she hates you. (Mind you, we have been working on this for years and are making progress, and I’m hopeful that this won’t be an issue for her as an adult – but it really really helps while we are trying to make that progress so that she doesn’t get ostracized.)