Hi there,
I am Dad to a late 20s autistic child. They came out of school at 9 when they had a meltdown over the teacher wanting to define the shape of their work tasks. I already home educated their sisters so that wasnt a problem for us. I ran a commmunity centre / local venue when they were a teenager and so taught them to run the PA, and work as audiovisual / IT technician part time. When I left London they were 18 so decided to stay on with the other families they knew well from the centre and we found lovely digs with a local single mum. I subsidised their living costs as finding additional work was clearly a big challenge. I thought they would just mature and grow into the skills needed to move on into work for other venues, but the social barriers were too high to overcome. After several years I didnt want to subsidise London costs any more so they joined me and Mum in the south west where we have a sort of granny annex that provides perfect adjacent living accommodation. Finding work is too challenging for them due to the social stress, studying is not interesting enough and has no clear end goal since it just leads to the scary work, and motivations are too muddled for self motivation. House chores and self care are a real effort and uncomfortable struggle. They study endlessly, following their own interests, and have a real flair for self analysis, all things to do with sound and music production. Their autistic superpower is a huge sensory bias towards sound, and they would make the worlds best film soundtrack engineer if they could do it in an isolated bubble not requiring any social interaction with the rest of the team. They are highly intelligent, highly articulate, intensely kind, moral, and warm, with an enormous interest in psychology and the mind. When they were in London they gave their landlady very sound relationship counselling support and would love to pursue counselling or therapy as a career, but the barriers seem overwhelming. They stumbled into awareness of their autistic traits at 20 when an online autistic friend pointed them out. In the intervening time I came to terms with the fact that they werent going to grow out of these difficulties in the same way I did. I have some autistic traits that I have managed to work around and reach a stable happy adult state, but their traits are much more intrusive causing various patterns of anxiety, frustration, anger and meltdown. My wife has autistic traits somewhere between mine and his, and also has never worked for an employer for more than a month or two at a time. So it hasnt been too big a change for me to realise that I adopted one semi-self-sufficient adult, but that has resulted in another one coming in the package . They each have a directness and supportiveness and a unique creativity of thought that I would not give up for the world.
I am here to explore what happens next with my adult child. To date I support them out of my own income, which is manageable. But at the same time I want them to be known to the system for three reasons, (besides the possibilty that they might be able to pay for their own upkeep ). One of course is that at some time in the future I wont be here, and they may still need some kind of support. The second is that if they enter further education then a recognised disability can be real help. One of my daughters has a mental health diagnosis, and there are times at university (she has 3 degrees and is now on her PhD) when it takes all the pressure off to just wave the flag and ask for some allowance for her increased difficulty with performing reliably. The final reason is that without an ESA claim they are not accruing pension credits. But getting an ESA claim involves starting a debate with the "system" as to why they are not in employment and training. Up until now I have shied away from pushing at that door because I know how difficult dealing with agencies can be. They talked to the GP about a diagnosis and got a discouraging "Its very hard to diagnose with an adult". I am not sure where we go next. Does a diagnosis make it easier to get registered with the ESA side of things? Is there council support arising from the Autism Act to smooth the contact with ESA? Or does it work out alright just to go straight for an unmployment claim and declare unconfirmed ASD diagnosis which makes going to interviews and training impossible? All advice greatly appreciated
Anyway thanks to everyone here who moderates, and provides support and advice. I worked as a home education advocate for a decade and know how much hard work it can be.