Adult son with Asperger Syndrome

Hi there,

The NAS office is closed right now, but I can offer two pieces of advice immediately, and refer this thread to staff with more specialised knowledge on Thursday when we return.

Firstly, while work advisers and other such people may be helpful in some ways, they are not professionally qualified to diagnose autism spectrum conditions, and their opinion as to what is a disability is in no way legally binding. For a diagnosis, you and your son should approach a GP, who can provide a referral to a qualified professional for full diagnosis. There are details on our site here: www.autism.org.uk/.../how-do-i-get-a-diagnosis.aspx

Secondly, whether or not you are disabled is not dependent on whether you have a condition which is specifically 'recognised' as a disability. Under the Equality Act 2010 (which has superseded the Disability Discrimination Act) you are considered to be disabled if you have a health condition which has a substantial effect on your ability to work or do everyday tasks, and which has lasted, or is reasonably expected to last, more than 12 months. It doesn't matter what the condition is, aside from a few highly specific inclusions and exclusions that don't relate in any way to the autism spectrum.

For my part, I have an invisible physical disability which has so far not been properly diagnosed. But it can be counted a disability, because although we can't name it, the symptoms fit the description above. The situation with any autism spectrum condition is similar; if it has a substantial impact, then it counts. A GP should know this, but I've had wrong advice from medical professionals before now, so always be prepared to challenge.

That should be sufficient for qualifiying for an interview under the guaranteed interview scheme, for requesting reasonable adjustments in the workplace, and for the purposes of any action relating to disability discrimination.

Qualifying for specific disability benefits can require more than just a disability within the meaning of the Equality Act. There are full details on the website here: www.autism.org.uk/.../benefits-for-adults-with-autism.aspx - Again, be prepared to press the point if an official doesn't understand autism.

I hope this proves useful; I'll be back with further details in the new year.

Best wishes,

Alex R (mod)

I find it baffling that just because he can dress himself and cook his own meals he doesn't count as disabled.

This is treating autism as a physical disability surely? Blind people can dress themselves and cook their own meals, does that mean they aren't blind? Many people with Downs Syndrome can dress themselves and cook their own meals. It is truly ludicrous that this kind of assessment is going on.

NAS moderators please offer advice here to starfish on what she should do. Can NAS help her son get a proper assessment?

As regards computing skills and employment, the facts remain that while some people can, mostly it doesn't work out, for the reasons I've given.

It is particularly worrying as regards the numbers coming in to university to study computing and "hitting a brick wall" by second year. A degree requires aptitude in all the aspects specified in the course. Many "would be"s don't have enouigh aptitudes across the range.

Just because someone is "good with computers" doesn't mean they can hold down a job, because it means being able to deliver what the job asks for, which may be outside the aptitude range, and it also means being able to adapt and rapidly assimilate new developments.

I wish I could get this across because so many young people on the spectrum are being pushed in this direction inadvisably, failing the courses or failing to sustain the job expectations, falling down and losing hope.

A bit more care and they might have found a good sustainable vocation. Surely when people's futures are at stake the issue deserves more than knowing a few people like computers. And one person who is doing well as a programmer (well there are lots of different contexts of programmer and he may be in one where it works well for him - but as they say "one swallow doesn't make a summer").

I thought that if a child gets DLA the parent automatically qualifies for Carer's Allowance (providing they aren't earning over £100p.w.).  I'm not sure if this changes when the child reaches adulthood though.

Here is the eligibility criteria for you to see if you qualify:

https://www.gov.uk/carers-allowance/eligibility

Because my son is able to cook his own mealsif fairly physically fit (apart from being overweight) and get himself up and dressed he only get minimum rate disability allowance and I have been led to believe that he does not require enough hours care for me to be able to claim careers allowance, plus i recieve a pension from my old job so probably would not quilify financillly anyway.

I have been looking into scial groups for him to jion but the nearest  NAS one is  over 30 miles away. he recently started attending a local social evening for people with learning and physical difficulies which he enjoys.Dispite his interest in computers he is not interested in social media sites.

It's interesting to read what you say about computers Longman.

I have always loved and had quite an aptitude for computers and even considered becoming a programmer.  Both my girls are on the spectrum and very adept with computers and I also know another Aspie who is a computer programmer.  The only problems he has had at work are unrelated to his actual work.

It is unfortunate that the myth persists, even on respectable websites, that people with autism or asperger's syndrome have an aptitude with computers that would be valuable in the workplace. This has led to many people on the spectrum trying to follow this career path, or going on courses to that end.

There certainly seems to be a propensity for many people on the spectrum to get a great deal of fulfilment and focus from working on a computer, and to develop useful computing skills. Some do develop useful aptitudes with computers, but sadly that seems to be a minority.

Computers, forty years on from early prototypes that filled rooms, are now a medium with a great diversity of arteries and applications. An aptitude for one aspect of computing doesn't take you very far.

And what seems mostly to happen is that some people on the spectrum become very good at games or good at servicing and modifying the software used by their peers, which gives some popularity.

But to succeed with computers you need to be adaptable to change, the technology advances by leaps and bounds, and you hardly get good at one thing before you need to learn your way into another. The narrow focussed inclination of people on the spectrum and resistance to change makes that difficult.

I'm appalling with computers, intimidated by every little thing that goes wrong, and needing to be rescued all the time.

But I've spent a lifetime working with them. In the 80s I was working in the front line of graphics and display design, mostly on map based displays, or sensor information, and the design of graphics in high performance environments, and the ergonomics of displays. This was because I had unusual aptitudes, which meant I could solve problems that stumped software designers and programmers. But the move away from supported environments to the 'personal' interface really floored me. I've gradually retreated.

I'm also a bit worried if all you have looked at is working with computers or warehouse work, though I wonder if the psychologist was just plain ignorant, or clever enough to know there is some sophisticated software used in warehouse management systems.

The problem, as I see it (personally) lies with how far you can move out of your "comfort zone". Someone very narrowly focussed would find it difficult, but even so it is possible to explore how far they might compromise comfort in the quest for useful adaptability. Others may be better able to diversify and adapt.

There is a potential trade-off between what you would rather do and what you might be prepared to do allowing for some level of comfort.

I didn't have a diagnosis (not until mid-fifties) so I was just confronted with the "sink or swim" dilemma. I wasn't badly over focussed, but it took a long time to broaden my interests and do things I didn't like, and gradually I found I could do things if I found an interesting spin on them. Even so I suffered badly from a kind of compartmentalisation between what I could do, and what I not only couldn't do but was quite scared of doing, or quite stupid at (including many key aspects of computing). And I survived sometimes coming very close to redundancy or dismissal because I was such an awkward cuss. 

I think though that you need to take a long hard look at other career options. Look at anything he has shown aptitude for even if not a current hobby. People tend to be fixated by "respectable" careers - teacher, accountant, surveyor, doctor, nurse etc. There's an enormous amount of variety out there and websites you can use to expolore with.

What level of qualification has he reached?

Also IntenseWorld is absolutely right, the difficulties getting disability support are more likely to be because the mess the system is in currently, and the government (particularly DWP)'s gross ignorance of autism, which in the light of the Autism Act is astonishing.

Anonymous said:

From what i understand, as his disability is not severe enough to be classed as disabbled, if he is not accepted onto ESA

Whoever told you that is lying.  Asperger's syndrome is legally classed as a disability.  If anyone says he is not affected enough, they clearly have no idea and are not in a place to know how he is affected - unless they can read his mind.  Every person on the autistic spectrum is affected in their own individual way and one person with it cannot be compared with another.

http://www.nhs.uk/Conditions/Autistic-spectrum-disorder/Pages/Diagnosis.aspx

"A diagnosis also means that the person will be classed as having a disability under the Disability Discrimination Act. This means that their employer (if they work) must make "reasonable adjustments" for them in the workplace, such as providing clear written instructions.

Once diagnosed, adults may be able to access autism-specific services, such as supported living services and social groups, if these are available in their area. Services for adults are listed on the Autism Services Directory."

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/benefits-for-adults-with-autism.aspx (benefits he is entitled to).

Thank you for your reply Longman and I relise after reading it i probably did not explian his circumstances or my concerns for him very well.

Although I love my son i can not class him as highly intellegent. Since leaving school he has completed various computer couses but , although computers are his main enjoyment, his skills and concentration levels do not seen to be good enough to get him work in that industry.Some while back he was seen by a work psychologist who decided warehouse work might suit him but from what i have seen on TV about warehouse work I doubt he would cope with working at the speed they require or be happy with the noise. At the moment we are looking to get him some voluntary or part time work in a small office.yes you are probably right he may never get a job and then if he does he may not be accepted or even be bullied as he was at school but the alternative we have been given is too hard to bear.

From what i understand, as his disability is not severe enough to be classed as disabbled, if he is not accepted onto ESA he will be taken off his benefits altogether which would leave myself and my husband in a difficult financial situation. The only alternative to this I have been given is that he applys for independent living. my son is adament that he does not want to leave home and we are adament that he should be able to live with us as long as he wants to.

i think what worries me most is how he would cope if somthing happens to us? Without work or some alternative income he would not have the finances to survive. 

Another example of the Government's wacky benefits review not working. Good that you actually found a real live "disability work adviser", but why is he allocated to the work programme if his disability is so marked?

NAS needs to be more aware of the numbers of instances where the whole process is going wrong. See the various postings under Work and Volunteering on the review of ATOS and the benefits review.

If REMPLOY found him too difficult to place he ought to be entitled to benefits.

I can understand if you feel he ought to be self sufficient in life but as things stand most workplaces are hostile environments if you have social integration difficulties. So even if he gets a job his work colleagues wont necessarily be sympathetic or understanding (the Disability Discrimination Act deals with manifest discrimination, not subtle exclusion).

If you can improve his educational qualifications that can make some difference in that he can get work that is more intellectual in nature and might be less dependent on fitting in, but its not that easy either.

Perhaps if you can say more about his age, qualifications and the extent to which he is affected by his Asperger's Syndrome, other correspondents can identify with his story and offer their experiences and insight.

But in the meantime there is the impression that his difficulties are quite marked and therefore getting him into employment may be unrealistic.