Published on 12, July, 2020
Hi there,
Just wondering, does anyone else feel as though there is zero support out there? I have searched and searched including on this website and it just seems the only real support is for children, parents/guardians/carers of autistic children or severely autistic adults. I am high functioning autistic with a diagnosis in the past couple of years. It feels as though no one cares. Once I got my diagnosis there was zero follow up at all. Nothing. Is it not the people who have always struggled through life and never known why that need support? Of course children and severely autistic people need support, but it feels as though high functioning adults are completely left behind as if because we are high functioning we can cope on our own. I have been completely and utterly lost since graduating university with no direction and no purpose. I am one of the 88% of adults with autism who are out of work, but there is just no support to help those 88%.
I feel like I am slowly going insane and no one seems to care or want to help.
Am I the only one?
Sophie
You're not wrong. I also got 0 support after my diagnosis. There are several support groups for autistic kids in my area ... although to be honest I have to wonder if a lot of them aren't really more for the benefit of the parents of autistic kids. And there is help in schools. yes as some one says you have to fight for it but it is there if you push for it. The same is true for autistic adults who struggle to care for their own physical needs, the support is there although you may need to chase it. But for the other needs, social, romantic, economic? There is either no support or the same type of support offered to adults more generally which is often unsuitable for autistic persons.
My opinion is that this situation exists because circumstances compel authorities to address the issue of autistic children and vulnerable autistic adults. They do it begrudgingly because if they don't it causes larger problems or scandals. The law says children must receive an education but autistic children in school who's needs are not properly met are likely to be disruptive, however if they merely get excluded from school after school with out additional support being provided it becomes obvious that the school is failing the autistic child not the other way around and the prospect of a lawsuit rears its head.
Likewise with vulnerable autistic adults they are likely to be the victims of crime, or suffer ill health from poor self care, they may even die. All situations that can lead to court cases or inquiries.
Until the lack of support offered to high functioning autistic people has the potential to lead to someone somewhere loosing their job for incompetence or negligence the support for high functioning autistic people will not improve. As the old saying goes it's the squeaky wheel that gets the oil. I have to say often I wish that, as a community, we were more militant. It would benefit us in the long run.
In fairness to the powers that be in part its because they don't have a clue what to do with us. It's only now that diagnosis of autism is much more widespread that high functioning individuals who previously flew under the health systems radar and coming out of the woodwork. The studies on employment and social integration in high functioning adults with autism are very sparse and there is little will in government to use the public purse to fund interventions on an experimental basis.
We either have to wait a generation for researchers to get their ducks lined in a row or we have to start dictating the agenda and telling the government (as loudly as posable) what we, as autistic people, think we need.