This is apparently written from the UK perspective. It's heartbreaking that anyone feels this way, but I don't have any experience with the UK's system to know if maybe they're missing something.
In the US, my sense is that there are more formal educational resources for adults on the spectrum.[0] That's not to minimize the gaps in the system, but to say there are communities interested in helping adults with autism.
Note: This is what I've gleaned from my spouse, who runs an autism behavioral services company, so sorry if there are errors.
There are always gaps in the system. No matter what your issue, and no matter what the system.
That being said, once you're identified and diagnosed in the US, insurance is required to cover behavior analysis services until later than 18. But I'm not aware of any systemic services once you're in your late 20's, unless you're on the severe end of the spectrum.
The goal of those services isn't to "fix" or "cure" anything, as there's not a known fix or cure. Their goal is to help you with your goals. Often these include social interactions with peers to try to help you lead a life integrated with the rest of society. Sometimes it's academic (the goal is usually to have the students included in a general-education class).
But the real issue is the lack of available care. It's generally a very difficult field to work in, and there aren't enough providers by a long shot. The fact that insurance covers treatment helps, but it also creates a ton of demand. Clients who are younger than school-age can generally find services quickly and easily. But clients that attend school can see waiting lists for over a year in major metropolitan areas.
And it's difficult to attract people to the field. This is where insurance is a double-edged sword. By accepting insurance you have a large number of potential clients, but the rates that insurance pays are so low that it's difficult to attract quality staff. Think on the order of $15 / hr for the primary employees that the client will interact with. And it's not an easy job. My spouse ended up with major surgery that was likely the result of a client who grabbed my spouse by the hair and threw my spouse to the ground. It's hard to attract quality staff who will take that kind of risk for that kind of pay.
My spouse routinely hires high-school graduates and pays for training in the field, because it's the only way to fill those roles. Only to see the staff member leave after 3 months for another agency where they can get $2/hr more because they're already "experienced".
I was diagnosed with Aspberger's syndrome as a child (I know it's called autism spectrum disorder, but I don't like that name). My school district had pretty rigorous special education programs for learning social skills and such. Most people wouldn't guess I have any issues now but it does bubble up. I work at Microsoft now, and while I didn't come in through their autism hiring program I have gotten support. I am encouraged by how much support Microsoft, and I believe the other tech companies are giving. Honestly, coming into the company I was a little cynical about the companies diversity programs, but I feel like the culture is about legitimately trying to help everyone.
It's a problem with anything chronic or long term. The people still have the problem but their support suddenly disappears because they magically transition overnight from a child, who in America at least have some marginal bipartisan support for helping, to an adult, where assistance is much more fraught and spotty.
If compared to physical disabilities, Autistic sufferers are sometimes a lot worse off as their symptoms are not visible. Convincing the social services becomes quite difficult.
Worse still, the resources in schools are (for perhaps obvious reasons) only aimed at those who autism stops them learning/makes it difficult to learn. If you're on the spectrum and can do decently well at the curriculum but struggle socially/with general anxiety/etc, then you're often on your own.
This is the situation I was in at school/college/university. Meanwhile when you leave education, the same situation applies there too; the organisations and resources seem to mostly be focused on making sure someone on the spectrum is employed/not homeless, with zero real thought towards their general wellbeing.
>If you're on the spectrum and can do decently well at the curriculum but struggle socially/with general anxiety/etc, then you're often on your own.
Or worse yet, go undetected.
I was out of college before I realized I had been pushing upstream for my entire school career. My partner had gotten identified and gotten help, it wasn't easy but much easier.
I had always tested very highly on standardized tests but was a horrible student. My mom would tie me to chairs, my teachers would verbally abuse me, all of it. Not to mention the social issues I had.
It's a relief to know now, but it leaves me wondering how differently my life would've turned out had someone thought to test and accommodate. Even now I am just kind of not really sure what to do with the knowledge, beyond not guilt-tripping myself for being more "normal".
I don't think this is a problem specific to autism. Schools, at best, are focused on preparing people for employment, or, more typically, on preparing students for exams. Neurotypical students are set up poorly to manage their mental and physical health, finances, relationships, etc.
Other forms of preparation for life: social skills; financial skills; political engagement; health, are rarely prioritised.
Giving autistic children help with academic learning and disruptive behaviour is conventional, as it is for all students (albeit with special measures and allowances made). Other life skills are neglected, as they are for all students.
The "general wellbeing" part got me thinking. The underlying questions that surfaced were "What does and doesn't society "owe" us? What do we expect from it?"
There’s no need to quote mental. The idea that it’s “all in your mind” is exactly true, except that, arguably, mental health can at times be more important than physical health. A mentally unhealthy person may be more likely to make physically unhealthy decisions, intentional or not, whereas a physically unhealthy person is generally not affected at all as to their mental health.
Obviously bad physical health can frustrate and depress, but it only changes reality, and does not directly change our perception of it.
my cousin has autism that will require lifelong care, and his parents have passed. He turns 18 soon, and the plan for now is to keep him in school with the "no child left behind" rule as long as possible.
FWIW there are some studies being done by the DoD on children with autism. [1]
There is also some discussion on this by Dr. Rhonda Patrick and Dr. Jed Fahey on youtube about Isothiocyanates and the related DoD studies on autism. It's 2 hours, sorry I forgot how far in they started discussing this. [2]
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[ 3.3 ms ] story [ 68.4 ms ] threadIn the US, my sense is that there are more formal educational resources for adults on the spectrum.[0] That's not to minimize the gaps in the system, but to say there are communities interested in helping adults with autism.
[0] http://collegeautismspectrum.com/collegeprograms/
There are always gaps in the system. No matter what your issue, and no matter what the system.
That being said, once you're identified and diagnosed in the US, insurance is required to cover behavior analysis services until later than 18. But I'm not aware of any systemic services once you're in your late 20's, unless you're on the severe end of the spectrum.
The goal of those services isn't to "fix" or "cure" anything, as there's not a known fix or cure. Their goal is to help you with your goals. Often these include social interactions with peers to try to help you lead a life integrated with the rest of society. Sometimes it's academic (the goal is usually to have the students included in a general-education class).
But the real issue is the lack of available care. It's generally a very difficult field to work in, and there aren't enough providers by a long shot. The fact that insurance covers treatment helps, but it also creates a ton of demand. Clients who are younger than school-age can generally find services quickly and easily. But clients that attend school can see waiting lists for over a year in major metropolitan areas.
And it's difficult to attract people to the field. This is where insurance is a double-edged sword. By accepting insurance you have a large number of potential clients, but the rates that insurance pays are so low that it's difficult to attract quality staff. Think on the order of $15 / hr for the primary employees that the client will interact with. And it's not an easy job. My spouse ended up with major surgery that was likely the result of a client who grabbed my spouse by the hair and threw my spouse to the ground. It's hard to attract quality staff who will take that kind of risk for that kind of pay.
My spouse routinely hires high-school graduates and pays for training in the field, because it's the only way to fill those roles. Only to see the staff member leave after 3 months for another agency where they can get $2/hr more because they're already "experienced".
Children get more social services than adults, for sure.
In India they live far better, I suggest anyone with mental disability to join these social homes.
And these run with help of charity donations.
Funny, that people have this bad condition in developed countries when in India they've it far better, they don't have to worry about anything.
This is the situation I was in at school/college/university. Meanwhile when you leave education, the same situation applies there too; the organisations and resources seem to mostly be focused on making sure someone on the spectrum is employed/not homeless, with zero real thought towards their general wellbeing.
Or worse yet, go undetected.
I was out of college before I realized I had been pushing upstream for my entire school career. My partner had gotten identified and gotten help, it wasn't easy but much easier.
I had always tested very highly on standardized tests but was a horrible student. My mom would tie me to chairs, my teachers would verbally abuse me, all of it. Not to mention the social issues I had.
It's a relief to know now, but it leaves me wondering how differently my life would've turned out had someone thought to test and accommodate. Even now I am just kind of not really sure what to do with the knowledge, beyond not guilt-tripping myself for being more "normal".
Other forms of preparation for life: social skills; financial skills; political engagement; health, are rarely prioritised.
Giving autistic children help with academic learning and disruptive behaviour is conventional, as it is for all students (albeit with special measures and allowances made). Other life skills are neglected, as they are for all students.
What is today's social contract?
I really have no idea.
Obviously bad physical health can frustrate and depress, but it only changes reality, and does not directly change our perception of it.
There is also some discussion on this by Dr. Rhonda Patrick and Dr. Jed Fahey on youtube about Isothiocyanates and the related DoD studies on autism. It's 2 hours, sorry I forgot how far in they started discussing this. [2]
[1] https://n.neurology.org/content/90/15_Supplement/N1.002
[2] https://www.youtube.com/watch?v=V8IjvUVL3tw