Published on 12, July, 2020
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 appreciatedAnyway 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.
Hi - Are there no recording studios nearby that they can help out with? Local theatres? Do they have their own studio to be able to do sub-contract mastering?
Have you looked at getting a proper diagnosis? It can take 2 years with the NHS or for between £1k-£2k you can get a DWP and NHS accepted private diagnosis. This opens the doors to a possible PIP claim which makes getting ESA easier.
PIP is needs based so it's hard to fill the forms in to score enough points if the child is very able. https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system
DWP are a nightmare to deal with - they have so many fraudulent claims that they usually bounce anyone with hidden disabilities - you'll need lots of concrete evidence for the eventual interview, appeal and maybe tribunal - it's a long haul.
It's actually very easy to diagnose aspies - but it's common for most doctors to have no real clue about autism so they fob you off..
Plastic said:Are there no recording studios nearby that they can help out with? Local theatres? Do they have their own studio to be able to do sub-contract mastering?
In London they had that opportunity for 5 years but the challenge of taking the first steps was always too alarming. They tried really hard to the point of getting very depressed over it, but didnt make any progress, despite having some contacts in the business, and my offer to look for work in other venues. A known venue with life long known friends is of course a very different thing to strangers in a strange venue. Out here in the sticks the steps to doing this would be even more complex with the nearest large town an hours bus away. Going via local study / training would be a more possible avenue that we have discussed. Or doing some remote learning first to have a qualification.But lack of motivation is the biggest issue. They dont have an end goal to want to do this that weighs heavily enough against the effort involved. I think its more likely that one day they will get into work over the internet which they use very comfortably by text and voice channel. TEFL is the current favourite idea. They have been learning Japanese for a year and building language skills. Its another very auditory activity that could play well.
Hi Plastic. Thanks for your comments.I am very familiar with PIP and dealing with the DWP. My wife has fibromyalgia following a glandular problem in her 40s and is now unable to walk far and never leaves the premises. The car is too painful never mind not being able to enjoy the destination. We applied for PIP 3 years ago and appealed her first (minimal) award and got it increased a lot at the tribunal. My experience of home education was great with knowing how the system works, how to read legislation and find interpretations and case law, how to tap into advice forums, and how to handle communication with the officials. Thats exactly why I am trying to arm myself with information for this new puzzle!
My child is very intelligent and they have amazing workarounds for their traits, which for a short period make them disappear for any new contact. I was totally amazed the first time they did live music mixing with strangers to see them talk to a band for an evening for setup and the performance as if they were already buddies. My jaw dropped and I was sitting there thinking where did that come from. But that was in an area of proven competence for them, or rather known and recognised expertise, with many friends around to make sure they were ok, and they did the whole things on sheer willpower and effort at great emotional cost and under a lot of stress. They have significant dyspraxia (which I note as another marker now) and very limited handwriting so we did a private education psychologist assessment when they were 16 to get extra time / typewriter use for the English GCSE. We didnt identify them as autistic at the time so we said nothing about it, and the ed psych didnt identify my childs presentation as autistic. The psych noted high intelligence in all areas they could test but an inability to complete the (building block based) 3D model tasks due to dyspraxia. They also reported charming communication, good interpersonal engagement and eye contact, and strong family affection. My child has never presented with the social and interpersonal disconnect traits if someone is friendly and direct and the situation presents no performance demands that they are finding difficult. Rather they find the structure of things mystifying and distressing. People, their personalities and actions, social interactions requiring a response, meaning of communication, and tasks (motivation / judgement of correct performance) can all be impenetrable and distressingly confusing.They CAN cook, and CAN care for themselves, even though they dont because they find it exhausting, can travel independently, and can communicate articulately, so I guess for PIP you would have to be going for social anxiety. Yes contact with others in the context of a work or training task would cause overwhelming distress and risk of harm and probably it wouldnt take long, but at a single interview they will probably present as completely normal and competent. This child eventually sat a GCSE maths paper and then refused to go to the others, that was the limit of their ability to deal with the rigid scenario. Naturally they got an A with minimal effort. Teaching them was a nightmare because my presentation of the structure of maths hurt their head! It was wrong shaped!?Thanks for the possible angle, I'll renew my BenefitsandWork sub and see the forum says about anxiety claims at the moment and give it more thought. Yes I agree about the ease of diagnosis. My child and I both did the aspie quiz in 2014 when they were 20. I, despite recognising engineer type autistic traits in myself scored 191/200 neurotypical. They scored 134/200 aspie, clearly explicitly aspie in a totally different way to my minor traits, with attachment and communication being the areas where they did not pick up points. Which of course makes their inner stress from the other trait areas much harder to observe.