The real elephant in the room here is that the number of people diagnosed with rather profound developmental disabilities is rising rapidly.
Pediatrics has published a new study that describes how often developmental disabilities were diagnosed among children in the United States, and trends over time.www.cdc.gov
If we take the CDC at their word, ASD diagnoses have more than doubled in under a decade. What the hell is going on with that? Some sort of dietary or environmental factor at work?
amen i agree with you thereA few years ago I was tasked with carrying out what was supposed to be an independent assessment into services in my local area for people with Autism and Asperger's. The levels of arse-covering, self interest and blatant interference that I encountered was maddening.
Broadly speaking, these were the key issues:
- It was not possible to access Autism-based services, or government funded support, in the UK until a formal diagnosis had been made. Unfortunately, establishing whether someone has Autism is a protracted process. There were simply not enough resources to carry out these assessments in a timely manner. Consequently there were people with Autism who couldn't get any assistance beyond what was provided by charities and this would go on for years. Furthermore, there was no clear pathway to getting an assessment. Even people working within the local healthcare system were not entirely clear on what was required to get on the waiting list. Those who had succeeded had done so through a variety of different methods. An approach that worked for one family wouldn't work for another. It seemed to be completely random. At the time, self-diagnosing yourself with Autism on Tumblr was not widely accepted within the medical community.
- There was no directory of services for people with Autism or Asperger's. In my communication with sufferers and their families I was often made aware of services of which I had no previous knowledge. There was one-widely praised sports program that I only found about by accident. When I wrote to the person who ran it, with a list of questions, she did not reply. It was only when a charity intervened on my behalf that she responded. I think that, in some cases, the people running these services wilfully operate below the radar, at a level where things are manageable and there is little outside interference. I sympathise to a degree, though people undoubtedly suffer as a result of these services not being more widely known about.
- The needs of those people with Autism and Asperger's who can cope up to a point are frequently overlooked, as they not considered as urgent as the needs of people with, for example, advanced learning difficulties. When these individuals do snap they are often treated as violent without any consideration being given to the cause of their behaviour and how best to approach them.
- Many young adults with Autism and Asperger's were still living with their parents, who were mostly single mothers. Raising a kid with Autism is hard on marriages. These young people had difficulty securing and maintaining employment. Furthermore, many had withdrawn from claiming unemployment benefits as the process is confrontational and few job centre staff were trained to work with people who are on the spectrum. Consequently these individuals had no disposable income, they left their homes infrequently and had limited social interaction, which in many cases exacerbated their condition. In the long term it seemed likely that there would be a population of very isolated middle-aged people with Autism, whose parents had either passed away or who could not longer take care of them. It is difficult to know how they would cope on their own. I would have liked to have done some more investigation into the problems faced by older people with Autism, however it was too much for me to do on top of everything else.
- The behaviour of some charities who were working in this sector left a lot to be desired. One charity asked me to circulate a press release for an impending consultation hosted by the local council, where the future of local Autism services was to be discussed with those who were affected. The press release framed this event as if it was exclusively for the parents of people with Asperger's, as opposed to being open to anyone whose lives had been touched by Autism. It was very aggressive in tone and instructed parents on the manner in which they should address the panel. I heard later that the head of the charity was concerned that the needs of people with Asperger's were being overshadowed by the effort that was being made to address the needs of people with Autism. I boiled the press release down to the bare facts and sent it out. When the charity complained, my manager's boss compelled me to send out the original release, even after I pointed out the parts of the Autism Act that we would be breaching as a result. Incredibly this person held a seat on the local Autism council. At this point the Autism Act was relatively new, amounting what was basically a paragraph or two of law, and two lengthy documents containing guidance on how local authorities could meet their new responsibilities. These allowed for some leeway in the type of services that were provided, based on local needs, but also (inevitably) some wiggle room to shirk some of these duties.
The TL;DR here is that not every person with Autism is a genius who can break down the number and colour of the sprinkles on your doughnut. I have met people with that insane level of focus but they are not the norm. If there are no suitable jobs for the average person with Autism or Asperger's, then they need, at the very least, easy access to unemployment and disability benefits. Services need to be more cohesive and there needs to be better overall communication and coordination between providers. The Autism Act was supposed to provide this, however shortfalls in funding and general fuckery, of the type I have described above, mean that what is actually in place is often unsatisfactory.