I pit the belief system that says that autism isn't bad

The BBQ Pit
1

I was diagnosed as autistic (Level 1 ASD) three years ago at the age of 64. Since then, I have heard things like “autism is a superpower” or “a gift”, Time Magazine has a special issue on autism and on the back cover, there’s a photo of a young woman holding a sign that says “my autism is awesome”, and there’s a pediatrician who makes a reference to how she gets “…to see the beauty of the diversity within the spectrum.”

So here’s the reality from the coal-face. My fucking autism, which is not awesome btw, stole a significant part of my emotional life, has, on numerous occasions, almost destroyed my marriage and could have rendered me close to unemployable, were it not for the fact that that I knew enough to mask at enough critical times (despite being undiagnosed) that I didn’t get fired.

It has also stolen a significant amount from my wife as well.

And not to sound like a severe whiner, I’m going through a severe grieving process at the moment.

My wife and I also are friends with a couple in which the husband was recently diagnosed (about a year ago at age 70) and, despite being level 1, is less functional than me and whose wife is going through a massive crisis right now.

No, autism is not just some alternate and wonderful way of thinking and behaving. No, neurotypicals should not just have to accept weird behaviour just so that we don’t have to mask. Autism is an evil, vile neurological shitstorm that compromises and sabotages everything emotional and perceptual, to the extent that I have to consciously (when I can or if I remember) filter and question everything I see and hear from someone, and there are times when I have to walk on eggshells with my wife because my fucking autistic brain is perceiving a non-threat as a threat.

It has also caused me to behave badly on this board a few times, for which I will apologize.

I don’t know where the fuck this mindset originated and maybe it’s the result of some '80s political correctness thing or something or maybe the world just felt that it needed some more useless, stupid platitudes.

Rant over.

2

First, I’m sorry to hear about your difficulties with autism.

As for the premise that you are pitting, my thinking is not that people are saying autism is great or a gift in the actual sense that they are envious and wish they had autism too, it’s more of a positive mindset to put the best possible spin on it. We all have some kind of disability or difficulty that we have to deal with. What’s a better approach— to make a person with a disability feel lesser about themselves, or convince them that they are every bit as good and valuable a person as anybody else? And maybe even better, in some ways? The latter, I think most would agree.

And maybe some so-called disabilities or hardships do confer an advantage in some way. A particularly strong, intractable and debilitating form of OCD runs in my family. My father and son were both clinically diagnosed with it. It’s not something I would wish on anybody. But my own tendencies toward OCD, mostly controlled over the years, I think has, occasionally, given me some small advantage: in the sense that my tendency toward “what-if thinking” has given me an attention to detail at times, causing me to think of anything that can possibly go wrong before I begin a project, a trip, or any endeavor that contains risks, and taking steps to avoid those scenarios and complete the thing successfully.

3

My best friend’s son is severely autistic. He’s 25 and he can’t really speak. He’s a pretty strong and mobile adult (he can ride a three-wheel bike, walks everywhere). But, he’s overly emotional, he throws tantrums that break things, he gets upset when things aren’t exactly the same as he thinks they should be. Plus, his parents are in their mid 60’s. Their son cannot live by himself, he can’t even be left by himself. He needs constant attention, correcting, guiding. If/when they die, he’s gong to have to be institutionalized, or find that one perfect guardian. Which is pure luck.

There’s nothing about his condition that is an advantage any way, unless you think being able to watch and follow two different episodes of Wheel of Fortune or Caillou at the same time is an advantage.

He has a brain in there at least as sharp as ours, but it’s trapped by the autism. He can understand jokes, but his sentences are not more complex than non-verb. Usually just one word. Complex human behavior is too much for him to understand.

The universe has robbed him of a real life. All we can do is make what he has the best it can be. If he could even understand the abstractness of the question, I’m sure he would choose to not be autistic.

4

Thank you for that.

In my case, it’s puns, wordplay, and lame rhyming, so I could have, I suppose, been a middling creator of cheesy greeting cards :grinning_face_with_smiling_eyes:.

I completely get that. In the grand scheme of things, I honestly can’t complain. Materially, I have done well despite my then-undiagnosed autism. However, spending my life never “fitting” and missing things that the rest of the world “gets” and having to decode everything has been a pain. Your friend’s son has my sympathy.

5

Well said, and I fully concur.

One thing to understand about the very wide range of syndromes that fall under the label “autism” is that they range from highly debilitating to things that are essentially just quirks of character, a range so broad that the term is basically meaningless. Many forms of autism are a high-functioning type that used to be referred to by the now-outdated term “Asperger’s Syndrome”. The idea that “autism isn’t bad” often comes from the observation that people with high-functioning autism have desirable traits like compulsive perfectionism that make them very good at certain tasks requiring high levels of skill and accuracy. The fact that they may lack strong social skills is often relatively unimportant in the ways that they choose to prioritize their lives.

6

Certainly some of the messaging can go overboard, but the underlying purpose is to help people make the most of their lives even if they have unique challenges. Quite often, diagnoses of things like autism would come with the assumption that the person would not be able to accomplish anything. But as you’ve seen from your own life, you have have been able to accomplish a lot. If you had been diagnosed back in the 60’s or 70’s, people would have assumed you wouldn’t be able to accomplish anything. You might have just been given limited education and people would have treated you like you didn’t understand anything. Now, people realize that autistic people can accomplish a lot on their own, and accomplish even more with specialized therapies and training. Those things aren’t cures and won’t make the Autism go away, but it will help autistic people to fit in with society much better. Regardless, I do agree with you that the messaging can often be overly positive. For people not familiar with autism, it may give the impression that having autism is a much more positive experience that it actually is.

7

Just FYI, neurotypical people struggle with all these things as well. That’s not unique to autism at all. In fact, the largest emotional crash-outs/flame-outs I’ve seen have been neurotypical people, not ones I suspected of being autistic.

I recommend couples counseling. If nothing else, it can open you and your wife’s eyes to how each of you communicate, what’s driving your behaviors, and better strategies for how to approach them and react to them. I know for my wife and I, it’s been nothing short of amazing. But both of you have to be willing to approach it openly and with a willingness to learn and change.

8

An excellent recommendation and one that we’ll be pursuing. In fact, I’ve been going to therapists for the last 20 years (initially for anger issues and not “fitting”, prior to the autism diagnosis). My latest therapist is excellent. As she is my therapist, however, regulations will not permit her to be our couples counsellor, though I personally would welcome her as ours.

9

Two of my grandchildren are autistic, which also often comes hand-in-hand with ADHD and, I think, sexual confusion. My granddaughter used to hold her head and scream while crouched in a corner when she was very young. She has now come out as trans in high school. My grandson had severe ADHD and was medicated all through his school years. He did manage to obtain a college degree and has a good job, but is subject to severe bouts of depression. He is also gay and living in Arizona, which I’m sure is challenging.

There is no real happy-time nonsense there. It took a lot of work to raise those two kids and I totally respect my kids for dealing with it in a positive fashion and making sure their kids can function in society. At least it was diagnosed early, unlike the OP.

10

I wonder how it would have been for you if you’d been diagnosed a long time ago. Knowing what you now know could have made a big difference in your mindset. I have 2 nephews who are on the spectrum and also have other issues - one has OCD, the other one is mentally ill. The first nephew has always known his diagnosis and has always fit in well with others in his schools and college who are also on the spectrum. He’s in a D&D group with others like him. He also knows he does have some “superpowers” - musically gifted, eidetic memory, etc. He’d much rather not have the social awkwardness, but he understands himself.

11

As I understand it, this idea largely comes from (low support needs) autistic people. It’s largely a response to the idea of “curing autism,” which seems to them to mean “completely changing who I am so that I am exactly like all those neurotypicals.” They may have difficulties, but they also have aspects they would not want to lose. They hate the idea that they are broken people.

The actual difficulties with sensory overload, physical symptoms, and the like are one thing. But a lot of assumptions about their social needs stuff seems to be more difference than outright disability. For example, I’ve observed autistic communities online, and you wind up with different social cues that allistics don’t pick up on that clearly label them as outsiders. So the old chestnut that they just lack social awareness isn’t true–it’s just different.

I have sometimes reminded some friends that not everyone experiences autism the same way, and a lot of the “cure” stuff is more oriented towards those who have higher support needs, and is more about the bad stuff. But I do get why it happens. They really do consider being autistic at least in some way part of their identity, and hate it being treated solely as a disability.

I think the best idea is to take it as some of both. Yes, there are the difficulties, but the idea is to not always focus on them. I guess this last part is close to what other said: I think the main thing is just that it’s not just others. It’s autistic people themselves who hate the idea of treating autism as solely 100% a disorder.

12

Autism is a spectrum. Mine just manifests as a need to have a predictable routine, over-planning, slight social awkwardness, and fascinations with certain niche topics that I feel a need to learn as much about as I can (like public transit schedules, for instance).

13

FYI, My youngest Serena was very much on the autism spectrum, and elementary level sorta when she passed away in a household accident at 18. Serena has a happy bunny without a single negative gene in her body. Damn, I so miss that girl.

Serena’s twin, is diagnosed with ADHD, and in my personal opinion “learned” neuro-divergent mannerisms over time (this I will never voice aloud). Serena’s twin was genetically female at birth. Came out as trans 3 days before starting high school. Started testosterone therapy 18 months later, which made a night and day positive difference to his debilitating anxiety. Had top surgery between Junior and Senior year of high school, did full name and gender legal changes on his own, pre-med science student with 2 B’s and the rest A’s after 3 years of university.

If my parental journey is of any help to any one on these boards, please hit me up.

PS. To the OP. I fucking hated the saccharine positive father of kids on the spectrum out there that approach with a 120 decibel “what a gift! You should be overjoyed” blah blah blah. Parenting kids heavily on the spectrum is not without it’s joys and beautiful moments that I would absolutely do over without hesitation if given the chance. That said, it’s way challenging for the child, the siblings, the spouse, the parents, colleagues, teachers, etc.

14

Right, it comes out of the need to counter to the notion that “autism” flat out means “unable to live a ‘normal’ life” and that it needs “fixing”.
(Let’s face even many of the neurotypical among us have at some point had to hear “why can’t you just be like every other normal person” … imagine a whole world telling you that every day)

But at times, OTOH yeah, it can then be turned into a sort of “identity politics” for the neurodivergent. That somehow someone on the spectrum or those around them should not be allowed to wish it could have been different, or to say it is hard. That’s an entirely unfair expectation.

15

Yeah, my son’s an extremely high functioning autistic kid, and he comes across mostly as being weird, or a ‘spaz’. His mostly manifests as a sort of obliviousness to the world around him, a lack of understanding of social cues/norms, and until very recently (he’s almost 15), trouble with disruptions of routine and transitions between places/states.

But… he’s very social, loves talking to people, and is generally a very nice kid. And his superpower seems to be an ability to see the world as it is, and accept it for what it is. He doesn’t engage in self-recrimination, what-ifs, or anything like that. Once something’s over with, it’s in the past, and he sets about dealing with the present and future.

That said, I wouldn’t call his autism a gift, but it is an integral part of who he is, and at least in his case, calling it a disability seems a bit strong.

16

This is a sensitive subject and I hope I can make a contribution.

I agree that trying to make autism sound better is useful (though if done clumsily, it can irritate.)
In a parallel way, I recently watched wheelchair tennis at Wimbledon - in front of a packed crowd and live on TV. That must have helped other wheelchair users.
This is an awesome performance by a deaf person:
WATCH AGAIN: Strictly’s Rose & Giovanni silent dance to Symphony :woman_dancing: BAFTA Must-See Moment 2022 :sparkles: BBC

When I was 57 (15 years ago) my doctor diagnosed me with Asperger’s Syndrome (I didn’t know that’s now outdated.)
Although I do really well in ‘non-social logical’ situations (I’m a high achiever at maths, computing and chess), I have always struggled to hold a conversation.
I have few friends (all from chess or work) and never had a romantic relationship.

I’m basically happy - but I wish my family and I had known I was autistic growing up.

17

If you meet one person with autism, you’ve met one person with autism - and vice versa.

18

In one of the recent updates of the DSM, Asperger’s and autism taxonomies were restructured such that Asperger’s became Level 1 Autism Spectrum Disorder (ASD) as the level requiring the least amount of support. There are also a level 2 and level 3 with Level 3 ASD requiring the most amount of support.

I’m level 1 as well and, as I understand it, not all autistics are going to have the same behaviours as there is essentially a “buffet” of symptoms. From that buffet, my big ones are difficulty in interpreting social cues (eg not being able to “reading between the lines of what people are saying and doing”), a tendency to take things literally, and black and white thinking.

Those symptoms have basically torpedoed a huge amount of opportunities for a potential love life and a normal career progression.

Having said that, I have done well enough materially and professionally despite it. I was an okay naval officer and I was an okay civilian employee after that but, tbh, I genuinely believe that I got more out of my employment then my employers got out of me (I was extremely fucking fortunate).

The big grieving point for me is the possibly ten different women who I had blown off, all the while thinking that women, for some mysterious reason, generally despised me. The result was a bachelor period comprising a series of failed relationships, one night stands.

It would be easy to leave all that in the past except that I am in a 35 year marriage to a wonderful woman despite my best, unintended efforts (from undiagnosed autism) to toxify and render dysfunctional that marriage.

Though I am basically “normal-presenting”, that’s not what’s happening in my brain; it’s a constant churn of second guessing and analysis and forcing myself to recognize that my wife isn’t about to leave me.

19

I find this thread so very illuminating. My management is getting away from labeling autism in the way the OP mentioned it. The OP’s right that there are significant flaws and end results from it. Thanks for writing this thread!

20

What’s the vice versa of that statement? If one person with autism meets you, one person with autism has met you?