According to the CDC1 in 68 kids has been diagnosed as being somewhere on the Autism Spectrum.
As toddlers, children and teens they can get services, either paid for by the parents (ABA and other therapies) or free through the schools (Sped, OT/PT, Life Skills).
But what happens when they hit that magic age, 21, and, as some parents/advocates say, “fall off the services cliff”?
I know there are group homes and assisted living type places, but there is only a finite number of them and most cost $$$ that a lot of parents don’t have.
What happens when the parents are too ill, too old, or die? I know some people can function independently with minimal outside support, but what about those that can’t?
Or not. “Autism spectrum disorder” is a reeeeeally broad spectrum now, which has been expanded to include children that have relatively mild social or learning disabilities, in addition to children with terribly difficult disabilities.
A lot of people in the past would have been classified as having “autism” if anyone had known what they was. Such people in many cases led pretty ordinary lives; they were just the people others thought were unusual, quirky, quiet, or whatever.
Well, in the case of my daughter, who is 30 and autistic, I have done my best to see she is taken care of after I am gone. I have a guardian named in my will for her, I am buying a house for her to live in, and because the is a new law about tax-free saving accounts starting Jun 30 for disabled people which doesn’t affect their Medicaid benefits, I will be signing her up for that.
Quite true. Among those in the range called Aspergers, the adults I know (including myself) have all done pretty well on their own, without ever having been so much as diagnosed as children. In childhood, they just got thrown into the general population and learned to cope with a sometimes incomprehensible society.
Similarly, today, if left to cope for themselves, instead of being conditioned to special treatment, there would be no cliff to fall off when reaching adulthood.
I think it’s ok to get special treatment if it’s in forms that help people learn to deal; some people need glasses to deal with bad eyesight, some people need to be taught specific techniques to deal with less-physical difficulties. The problem is when that special treatment only teaches that someone else will handle things. The first ones enable; the second ones disable.
Or to look at it from another perspective - early intervention services to kids with autism (including serious deficiencies of the kind which can really bugger up your life) are so much better now that the kids who received those services will be better prepared for the adult world than back in the day when the standard treatment was to fling them into an institution if they couldn’t cope.
Yes, there is a ‘services gap’ for older ASD kids - the one that I work for has had kids enrolling who weren’t much interested in the subject matter simply because it’s a service, and it’t targetting their age group. But it’s not like there used to be services for older ASD kids and now there aren’t - they (and families) were always left to fend for themselves - the difference is that now it’s likely that at least they got some help when they were younger.
And it’s also true that the ‘dramatic rise in ASD’ encompasses a lot of people who have simply been drawn in by widened definitions, and are quite likely to be able to get work as well as anyone else.
One of the most autistic persons I’ve ever met had a long and profitable career as an engineer, and retired with a good pension. He’s one of the most unbearable people to talk with – he does all the talking, and does not know how to listen. He monologues interminably.
I think that 1 in 68 is absurd. Most of the people on the “autism spectrum” will learn to live in the world, get jobs, get married, have kids, just like the rest of you. A friend of mine estimates that at least 50% of all the mathematicians he knows would now be diagnosed as autistic.
Now the few per thousand that cannot cope are another matter. I guess most of them will be institutionalized. Or in prison. But that’s not true of autistics, also of other mentally ill people, retarded people, etc.
ditto. I don’t think there has been any actual increase in the number of autistic kids. We just used to call them other things-nerds, anti-social, quiet, weird. And they went through life the best way they could. I know quite a few people who are productive members of society that would probably be diagnosed as autistic if they were born today; luckily, they weren’t, and just lived their lives.
I think a lot of you are focusing of the 1 in god knows how many autistics that would have been labeled Asperger’s and were functional genius level savants. I think the OP is more about severe autistic that are completely non-verbal, or may have some ability to communicate and talk but will in no way be able to function independently. I’ve read some disheartening news stories about how even relatively less severe cases like PPD-NOS, that also got early intervention still didn’t function so well independently after reaching adulthood.
Yes indeed. I have Aspbergers (diagnosed when I was 55.)
Since by then I’d already had a successful career, owned a house and was coping with society (even though I don’t understand most social behaviour ), my doctor said there was no need for treatment and I should just carry on.
I think a lot will be caught in that weird zone between “independent” and “dependent”. Like living with their parents not because they aren’t capable of keeping their own residence, but because they can only get hired for part-time minimum wage jobs. And many will not be disabled enough to qualify for disability or residential care.
I think the hypercompetitiveness of the current workplace puts people with slight deficits/handicaps at a big disadvantage. You have a standing appointment with a therapist? Well, that means you better find an employer who doesn’t rely on on-demand scheduling. Which means you don’t have a good shot at getting or keeping a typical service-sector job. And just about everyone is expected to be a “good team player” nowadays. Employers don’t want to hear excuses. They want results.
My friend has an autistic son. He rarely speaks, gets excited with things aren’t “right”, and screams and hits things, including his mom. He can’t drive. He doesn’t interact well with strangers.
He is now an adult. Although he was mainstreamed in HS, and rode the “normal” bus to school, he isn’t “high functioning”.
He is actually pretty smart, and can do some things on his own. He can use a computer and a DVD player (and watches two episodes of the same show simultaneously!). But, he doesn’t relate to the world properly. He doesn’t function well outside of a highly structured environment. He could never live on his own. He can prepare his own simple meals, but he could never restock the pantry. He gets along great when he is cared for by people that understand him, and guide him when his mood wanders. His folks can keep him focused and functioning (and happy).
But what would happen to him if his parents died suddenly? Who is going to take the time to understand him, help him? Would he end up institutionalized, dumped in some overcrowded and understaffed facility? And what about when he is 50? 60? What is the long term prognosis for cases such as his? I don’t think anyone knows.
My kid is “on the spectrum” - sensory integration dysfunction. Completely independent aerospace engineer, friends, hobbies, etc. He has told me that in his non-expert opinion, a good number of young adults impress him as self identifying as “on the spectrum” with the apparent goal of excusing their character faults. (Not phrased well - but some people are just jerks - whether or not the mental health community has chosen to apply a tag to them.) So yeah, there is an issue of a lot of “spectrum” kids sucking up medical and educational resources - same for a bunch of (FAR FROM ALL) kids and adults diagnosed with ADD, ODD, personality and affective disorders, etc. But these kids with relatively mild mental/emotional impairments will simply sink or swim when they gain adulthood. Or - IMO - a share of them will have family enable them, or will apply for SS disability benefits.
What to do with the nonfunctional folk is a far tougher question. I often wonder at the efforts/expense directed at profoundly impaired school-aged kids, whether those funds could better be spent compassionately “warehousing” them throughout their adulthood.
Care for nonproductive people costs money. I don’t want to preach eugenics, but I wonder at the costs involved in extending the lives of severely impaired premature babies. Or keeping demented old folk breathing. Or subsidizing costly treatment for sedentary obese smoking alcoholics. Folk with Down’s syndrome previously didn’t live past their 40s. Now they are outliving their parents - and developing Altzheimer’s.
I favor funding and staffing compassionate campuses/warehouses/institutions/whatever you want to call it for folk who are not willing or able to be independent or productive. But there has to be a clear examination of what amount of resources will be provided such folk with what goals in mind - and where those funds will come from. Maybe if we reform the “jail them all” prison system, those facilities and staff could be rehabbed and repurposed?
There are more services beginning to spring up that cater to adults. After years of not being able to get any meaningful help in trying to find a job, I found a place that deals specifically with finding jobs with people with autism. Now, it certainly helped that I am quite bright and well-educated, and was featured in a local news article shortly after being brought in to work with this agency, but the fact that they actually understood the kinds of things that I needed help with was critically the difference needed to be able to find a number of employers that would have loved to have me that I would have no idea how I would find on my own. I was able to land exactly the kind of job I wanted, even if it doesn’t start for another 6 weeks.
The state of Michigan in particular is going through an initiative that is trying to improve the lot of those with autism, after years of being well behind the curve in mental health issues. Now that a lot more children are being diagnosed at younger ages when their brains are more pliable, it’s easier for them to learn the necessary skills. Those that are too far gone will end up just like any other institutionalized individual I imagine, but hopefully we’re catching more of them and getting them up to speed with what they need to succeed. It’s one thing to just leave someone who refuses to talk alone like they’re retarded, it’s another if you understand exactly the problem they face early in life and take steps to correct it before it’s irreversible.
It is absurd. To reach that number the methodology was to have doctors examine health care records - not children - in less than 15 US cities and see if they sounded like they met the criteria for ASD and then extrapolated how many are in the country from that. In 2012, they only looked at the health records of kids in 11 cities. I believe more recently they added 3 more.
When you try to figure out their methodology, the CDC only says that they use the same methodology “as the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)” so you need to hunt for that, which is found here, concluding with:
I am starting to research setting up a business that would employ spectrum folks. Ideally, set up a community with group homes, counselors and a reason for living. My child, and many others, could spend their days playing video games and watching movies. I’d like more for my daughter than that.
Here’s a video on Rising Tidecarwash. There are also farms that are basically a full social network for folks on the spectrum (assisted living, therapists, work assist, etc).
Ideally, it’s a stand alone business. I believe that specially classified adults can work for less than minimum wage. Depending on the severity of Autism, the adults can qualify for Social Security Disability and maybe Medicare (Not sure about this). I used to work at Microsoft, and I know parents of spectrum kids at Google, Amazon, Facebook, etc. I’ll go after corporate sponsorship as well. Anyhoo, I’m just starting down this path.
China guy, here is the web page of a local, very successful bakery that employs special needs adults. Their baked goods are world class and the white chocolate popcorn is downright addicting!
), my doctor said there was no need for treatment and I should just carry on.