Last night I had to take my brother to the emergency doctor at 2am. He had a virus but suddenly he found he could not breathe, it was the same day he heard he wasn’t eligible for PIP as according to the ‘independent’ assessor he had no extra needs and was fit for work. It turned out that while my brother did indeed have a virus, the breathing issues were likely anxiety related, I don’t think it is a coincidence that he had just heard about his only source of income being cut off, do you?
See my brother is autistic and has suffered trauma in his life due to not being understood. As a result he is unable to leave his home at all for long periods of time, often months or even up to a year. He has a very limited diet due to sensory issues which are exacerbated by anxiety lives in a top floor flat which is an added barrier. He is phobic of doctor and won’t go unless he literally thinks he is dying, he can’t drive and can’t use public transport due to pain in attacks, yet he is apparently fit and able for work? He will of course appeal (with my help if he wants it) but even if that is successful he will still be financially in the bottom 10%.
Yet my brother has a high IQ, is an amazing graphic artist, an incredible 3D modeller, a great mixer of music and a brilliant IT tech. In another universe my brother could easily of been in top 10% finically, yes he really is that talented, so what happened?
The neurotypical world happened, that’s what. He struggled in school and at home and had terrible meltdowns for which he was punished so it just went down hill from there, he needed up in an ATU aged 14. He was finally diagnosed with Aspergers Syndrome at 27 but there are no adult services, i.e no one who understood autism to support him. On top of all that in the last 5 years, like me, he lost his Mum and his sister to cancer, he was too anxious to attend their funerals. He is still judged like an NT by many for that, like it was his choice!
Basically lack of diagnoses, support with education, understanding at home, and accommodations by society has made it not only impossible for my brother to work but damaged his mental and physical health. Then, as of this is not enough, he has to be castigated and refused the benefits he needs to simply exists. During his ‘independent’ assessment for PIP he had his entire diagnoses written off by a nurse because he looked her in the eye once. It takes a team of professionals to give an autism diagnoses but apparently one nurse can write it off?
This is what autistic people are up against, this is why (with his permission) I am sharing some of my brothers story, this is why I fight for change. I do it because we live in a society that actively disables autistic people, doesn’t provide for their needs, attacks them both verbally, physically and through the media for being ‘different’ and then either locks them up or leaves them to die penniless once they are broken.
I know this isn’t the story for all autistic people but it is for a far too many, more than 70% without a full time job, a huge amount reporting trauma induced mental health issues, and a far lower life expectancy than the average population and this is just off the top of my head.
If I sound bleak and negative please know that I say these things now because I know there are others like me fighting for change, a new generation of parents who realise that autism is a different way of thinking and it is our Neurotypically biased society that is disabling our children and damaging there future potential not autism itself. Most of all though, because autistic people themselves are finding a voice, finding their tribe and their strength as a unit and we need to not only listen to these autistic adults but stand with them and fight along side them because unless we do this not only will they continue to suffer this terrible inequality but it will be our children’s future too.