Need an apt analogy for autism/aspergers in young adult son

June 13, 2019 3:01 PM

My son is 21 and was diagnosed with Aspergers only 5 years ago, as an older teen. I struggle myself to understand what this all means. So does he.

He's very high functioning with slightly above average intelligence. But his executive function is very impaired, meaning he struggles with starting things, breaking things down into steps, figuring out sequences of tasks, and more. He also has ADHD (non-hyperactive type). If you met him you really wouldn't think there was anything different about him. But he's definitely non-neurotypical.

He just completed his junior year away at college where he barely scraped by and really struggled. But still! 3 years completed! It was a hard semester, very lonely and isolated, with a couple of panic attacks when he felt overwhelmed. He is now (as in every summer since he was young enough to go to summer camp) spending about 18 hours a day in front of his computer. He, typical of someone with his diagnosis, has social anxiety, so has very little social life. What friendships he does have are with people online. He hasn't been and isn't looking for a job or an internship or a volunteer gig. He won't accept help from me looking for something, though looking for work or other pursuits is a supremely difficult task for someone with his challenges. I'll send him links to various work or activities and he ignores them. He only helps around the house when I specifically tell him to. I am madly frustrated and frightened for him. He stays up till almost dawn and gets up at 2 in the afternoon. He's isolated and sedentary and lonely and unhappy.

I am constantly looking for fresh resources to get him help, but he refuses all forms of support. He wouldn't avail himself of the Disability Services at school, won't even consider any of the support and/or social groups through a local Asperger's organization. Nothing.

He refuses to meet or socialize with anyone else with this or similar diagnoses. He fiercely does not want to align himself with them or believe he is like them in any way.

I feel like a major key for him would be to be able accept his diagnosis and what it means and to accept that he needs help and support with some things in life. That certain aspects of functioning are legitimately too difficult for him to do on his own(demonstrated by his inertia). I feel desperate to help him understand. I keep trying to come up with analogies to help him understand, but everything I come up with implies brokenness or incompleteness. I'm drawing an unhelpful blank. Can anyone help?

posted by primate moon to Health & Fitness (9 answers total)

Best answer: Household electrical powerlines and outlets are different voltages/standards between Europe, the United States, and Australia. Any gadget from one might be literally unable to recharge in the other. This isn't anything to do with degree of function; a rechargeable geegaw from the US market isn't broken but is still in a bad way if the battery runs down in most European locations if you don't have the right power converter/adapter.

Support systems to make life more livable for the non-neurotypical are power adapters.
posted by Drastic at 3:08 PM on June 13, 2019 [6 favorites]

Best answer: I don't know if there is an apt analogy for autism which can help with your son's self-esteem, although Drastic's isn't bad.

And you can't force him to read anything, but you can read some books written by or written with autistic people which may well give you a better understanding of how we work. I'd recommend Neurotribes by the lovely Steve Silberman (I saw him talk in Manchester a couple of weeks ago, and he was delighted and flattered to be in a room full of people who he'd accidentally ended up giving so much validation), and also Fingers in the Sparkle Jar, which is a childhood memoir by Chris Packham, an autistic and fairly fanatical naturalist and TV presenter in the UK. And finally The State of Grace by Rachael Lucas, an autistic children's writer, which is a first person novel from the point of view of a 15 year old horse loving autistic girl.

I don't think you're going to get any earth shattering analogies directly from reading those, but I do think it may fill out a lot of detail that you don't currently have in visualising how he sees the world.

I also think that the autism is possibly not the direct cause of most of his failure to thrive. I think that's probably bog standard being overwhelmed with the world, exacerbated by social anxiety and the feeling of a lack of agency. Obviously the problem with the lack of agency is that it means that any attempt by you to suggest what he should do is counterproductive. I don't have a suggestion, assuming therapy's out of the question.

But I think that reading may well help you get the most out of the opportunities when you do get good conversation out of him. Good luck.
posted by ambrosen at 4:16 PM on June 13, 2019 [3 favorites]

I like the "anthropologist on Mars" analogy, and the idea that it's like going to a culture completely different from the one you grew up in and trying to understand things. If you grew up in America and then move to Japan, you'll need to consciously and attentively study how to say things, how things are done, what to do and what not to do, what different reactions and movements signify... and all of this takes deliberate attention, all the time (unless you're alone). It's exhausting, even if the people you're dealing with are trying to be kind and to connect.

For me it's been valuable to come to understand that I'm not wrong or broken, I'm different. (Insert various analogies about how "a Mac can't run Windows programs, but that doesn't mean it's broken.")

Neurotribes is a wonderful introduction to the topic for people who don't know much about it. While some autistic people dislike that it seems like it took a book by a non-autistic person for autism to get attention, I've met Steve and seen him speak and my sense is that he's an ally, not a white knight. He does a lot to boost and promote autistic people's writing about being autistic and what autistic people need. (Note that his next book is not about autism, because as he's said publicly, he thinks he's gotten enough attention and it's time to focus on actually autistic voices.)
posted by Lexica at 5:02 PM on June 13, 2019 [4 favorites]

He sounds depressed. I wonder if it would be more effective to approach him with help dealing with his depression instead of his Asperger's/ADHD.

I'd wonder if you can get him in counseling, at least to start, then potentially consider at least talking to a doctor about meds if that doesn't make a huge difference. He could even start with online counseling to start, then potentially switch to an in-person counselor when he's ready (and if necessary; if he's thriving with his online counselor he doesn't need to switch).

I would continue to do everything you can to get him out of the house some. Get him doing chores and cooking and cleaning and shopping and all else; he won't be thrilled but these are skills he needs to have and if he's living in your house you can be firm about this. You can also be firm about him at least needing a part time job. He really will not be thrilled but it's something he has to be able to do. Not having these skills now will hurt him down the line.

It's a tough situation to be in. Good luck!
posted by Amy93 at 5:07 PM on June 13, 2019 [3 favorites]

You have neurotypical privilege. You think something's wrong with him but he's just different and forced to live in your culture.
posted by Obscure Reference at 8:04 PM on June 13, 2019 [1 favorite]

He's isolated and sedentary and lonely and unhappy.

This may well have more to do with his screen time and sleep habits than with neuroatypicality. Spending an entire waking life sedentary and online, and getting only 6 hours sleep per day, is a highly reliable way to fuck up anybody's mental health.

Another large part of it is that being 21 years old is just shitty in 2019 because the sheer weight of lies that today's young adults have been exposed to throughout their formative years is simply crushing. It has become normal for teenagers to spend the majority of their waking hours attached to easily manipulated, usually exploitative and unprecedentedly attention-grabbing communications media, and this constant diet of mental junk food is just straight-up not good for humans.

It's quite rare to meet a 21 year old who actually has anything approaching a realistic idea of who they are, where they want to go and how they intend to get there. Whenever I start to wonder whether that's really true, all I need to do is think back to what I and my peers were doing at 21. None of us had a clue then, and nothing has changed since that would let today's young people, in general, have a better one; quite the reverse in fact. I would not like to be 21 in 2019.

It's also quite rare to meet a 21 year old who will spontaneously give up childhood privileges like being cooked and cared and cleaned for. Most people require the short sharp shock of needing to live autonomously in spaces shared with peers, not parents, before we even begin to understand just how much of what we'd always taken for granted was being handed to us on a plate.

As a parent with a 21 year old myself, watching her ram headlong into her own struggles, I can affirm to you that being the parent of a 21 year old is just hard. You have all my sympathy.
posted by flabdablet at 10:35 PM on June 13, 2019 [9 favorites]

So, not an expert. But my oldest had an ADHD diagnosis early - like 4th grade (he's now 21 in college and working, but struggling with focus and struggling with finding a doctor to explore some medical/drug options as his coping mechanisms aren't working anymore), and my youngest has the Executive Dysfunction diagnosis with ADHD. Middle one never tested, but likely has some light form. I likely would have been diagnosed if they did that when I was a kid.

Anyway.. my youngest (now 17) has similar issues as you describe.

One thing that has engaged ALL of them, even when they were lonely/didn't want to engage/etc is having a pet. They will stop their online gaming when it is time to feed the dogs. Even if they won't talk to anyone, they'll cuddle with the cat or a dog in their room. They'll walk the dogs. Just a suggestion on that front.

As for you specific question; I'm not sure convincing him that he has a problem via analogy will work. It could very likely be that he is all too aware that he has a 'problem' and he has for so long, his natural defense mechanism is to deny that he does to anyone that mentions it, even if he is aware himself.

The pet suggestion I also would say shouldn't be introduced as something to help him. But bringing it up in conversation; like "I was thinking of getting a dog, but know I won't be able to take care of it all myself - would you help do xyz (feed at x o'clock, walk once a day)?"

He doesn't want support, and he's wise to being tricked by you - so again, analogies aren't going to help. But something that will engage him in a conversation that doesn't involve other people or obvious reference to his Aspy's would at least open up a different path of focus/interest.
posted by rich at 5:35 AM on June 14, 2019

Further thoughts on parenting 21-year-olds just being hard: for me, the hardest part is watching somebody I dearly love make and keep on making choices that I'm pretty damn sure they're going to regret, maybe in a month or two, maybe in a year or two, and all the while knowing that there is fuck all I can do to persuade them to choose something else.

The only way I can deal with that and maintain my own mental health is to remind myself, strongly and often, that learning to use our newly found autonomy in order to make sound decisions is what being 21 is for, and that none of us - not one single person in the entire history of ever - has actually been any damn good at that by that age. We just haven't had the practice.

The worst part about that is that it's not me who needs the practice, it's my ex-kid, and the only way they're ever going to get it is by making fucked-up choices, over and over and over, until they work out that embracing hot stoves causes lingering burns. Because the simple fact is that at 21 they're not my kid any more. They are, God help us all, their adult.

There's a magnet on my fridge that says the first 40 years of parenting are the hardest, and I believe it. This second half involves less work in many ways but what it does seem to require is just being permanently on-edge, 24x7, waiting for the call that says you need to come right now to pick up the pieces; and hoping like hell that when that call does come, those pieces are going to glue back together into the person you simply cannot imagine ceasing to love.

The good part is that by and large this process does work, as evidenced by the fact of so many of us old farts still being around even if in some degree of decrepitude. We were all 21 once. Most of us did successfully get over it, one way or another. Just keep telling yourself that the overwhelmingly most likely thing is that your son will too.
posted by flabdablet at 6:58 AM on June 14, 2019 [2 favorites]

With regard to explanations, it's important to realise that these diagnoses exist on a spectrum, as expressed in the diverse cognitive styles to be found in any human population. We are all of us different in more ways than we are the same, and no single definition of ASD can describe what your son is going through. Even if there were, this is his battle to fight, and hard as it must be to watch, it's up to him how he deals with it.

I'm inclined to agree with those who say that the problem is more likely to be a combination of depression and anxiety, where the differences tend to complicate things, but I suspect the experience is pretty much the same. The best you can do right now is encourage him to limit his screen time, and take some form of exercise.

I do like Lexica's description of the "anthropologist on Mars", which was coined by the estimable Temple Grandin. I'm not a fan of most contemporary writing on the subject, because with the best will in the world it comes with a lot of spurious baggage about what constitutes "normality", and tends to focus on the more extreme manifestations. That said, I've enjoyed Oliver Sachs' work on the topic, and I've learned a lot from Tony Attwood's sympathetic approach to women on the spectrum, even though I don't always agree with him.

Ultimately though, I think if you want to understand the world through the eyes of a non-typical thinker, it's best unburdened by any such discourse. For that, you can read more or less anything ever written by Jonathan Swift, a roving Martian anthropologist if ever there was one. Gulliver's Travels is obviously the classic, but for the pure misanthropic frustration, I love his essays.
posted by Elizabeth the Thirteenth at 2:18 PM on June 14, 2019 [1 favorite]