son 25 may be on spectrum

My 25 year old son was diagnosed with Crohn's disease when he was 18. This lead him to have a severe depressive episode. The mental health team eventually said that they thought he may have mild autism. He refused a diagnosis and got quite annoyed about it, so it was taken no futher. His new GP also thinks he may have it although his old GP was not convinced. Anyway he's just finished his university degree with a basic pass and can't get a job yet. He can't claim jobseekers as he saved up all the allowances he had when he was ill and has over the savings limit. He doesn't get any allowances now. He still blames my husband and I for him getting the Crohns disease, which is thankfully in remission and will not discuss ASD. On top of everything my husband has just been diagnosed with heart failure. I lost my mother with heart failure this year so this was an added blow for everyone. My son could put his savings towards my mother's bungalow which is now owned by my sister and I. If we helped him to own the property he could then probably claim jobseekers. But he prefers to live with us. We don't mind supporting him but we are now on pensions. I think if he could get a job things would look up, but they are difficult at the moment. I just wondered if anyone had any suggestions. Thanks.

  • Thanks longman and recombinantsocks. I'll have a look at those links.

  • Former Member
    Former Member

    The subject of "what is a good job for someone with Aspergers?" comes up regularly on the forum e.g.

    community.autism.org.uk/.../so-what-do-you-do-living

    and

    community.autism.org.uk/.../what-unskilled-work-doesnt-involve-too-much-social-co

    There are some suggestions there and also the jobs that some other posters on the forum do.

    Generally, we are not so good at dealing with lots of people in busy, noisy environments. One of the reasons that some of us do computing is that working at a computer all day can be more interesting for us than it would be for lots of other people who would get bored with staring at a screen and not doing a great deal of social interaction. For some of us, it can be heaven! However, it doesn't suit everyone and Longman is quite right to highlight the fact that it is too frequently recommended for people on the spectrum.

  • It is more a case of looking at the course content.

    The classic misunderstanding is doing mathematics because of an aptitude for numbers. Most of academic mathematics is conceptual and theoretical, working in abstract concepts rather than numbers. The abstraction is often so remote from an interest in numbers as to be soul destroying. If there was a degree in arithmetic that might suit someone on the spectrum - or else accountancy.

    In computing, it might seem that an aptitude for certain types of programming or computer games point to the value of a computing degree. However the degree content is much more varied - database structures, database management systems, operating systems, security, telematics, knowledge based systems, data mining, system design, project management, applications to different user groups etc. etc. Some of these aspects might interest someone on the spectrum, but to complete the degree he/she would have to do ALL the aspects, not just the ones they liked doing.

    Also one of the bugbears of computing degrees is working in teaching rooms full of computer terminals, sometimes shared between two students, but certainly where the students are close to their neighbours. Many terminals all doing slightly different things is distracting/overloading as well as the proximity to other students. These teaching rooms do tend to be poorly ventillated and hot. It may be harder to get a preferred seat. Also the work done may be rather prescriptive and people on the spectrum may be frustrated by having to follow through the entire process, and record their decision steps.

    Its not so much that there are degrees better suited, but that you need to look particularly carefully at what degree content someone on the spectrum wouldn't be keen on doing, and also look at the teaching environment.

    Other tricky areas are group work, especially where the marks are given jointly, giving presentations in front of other students, certain types of assignment layout where a person on the spectrum may not be happy doing it the prescribed way, types of problem solving and working out, where part of the assessmnent is the way you explain it - many people on the spectrum just like to give the answers and not discuss the process.

    I'm generalising, but these are the sorts of things that often crop up. Group work is often a stumbling block because students will try to avoid having the AS student in their group - it is usually a recipe for disaster, but exceptionally some AS students do actually work well in a group. So it isn't a rule....just you need to anticipate where a son (or a daughter) doing a course would encounter difficulty.

  • Thanks very much Longman. It was all my son's decison to do the course. It was what he thought he wanted to do. Could I ask what people with AS seem to do best in, although I suppose there is a lot of variation. Thanks for the advice and the the link. That's very helpful.

  • I know I go on about this too much, but nevertheless I venture to ask why he did applied computing? 

    Computing courses do seem to adversely affect people on the spectrum, who may take them up because of an interest in an aspect of computing - and because it is often suggested computing is a good subject for people with AS. The trouble is the degree usually requires completion on a broad front, which means doing less interesting, and sometimes frustrating things.

    That you mention he repeated third year sugests he found computing as a degree less rewarding. Quite a few people on the spectrum either withdraw midway or perform badly in computing, the same is true of mathematics.

    Bear in mind, if he can find the funding, or support himself through part time work, he could develop a pass degree to honours by doing a sufficiently related degree course that can use the points gained, in order to make the qualification into something he does enjoy, and possibly part time.

    Also a computing degree should allow him to develop in an area of computing he likes. Just because it is a pass doesn't prevent him showing aptitude at an aspect of it.

    Try fisss.org/.../ which has a list of 18 sectors, some of which represent computing employers particularly creativeskillset (media including computer games), e-skills, semta and so on. These may give you ideas where he can find his potential.

    Although the Government have remodelled this site around apprenticeships, there are others ways in. So don't be deterred by the apprenticeship flavour.

    The Sector Skills Councils can often find novel opportunities that might suit someone on the spectrum. 

  • Thanks for your reply. It is a big achievement and I do tell him so. He did infact repeat the last year. I think he is just getting fed up with trying to get a job. He has had a couple of interviews which is good. It does seem very hard now for young people to get jobs anyway. I don't think he will tell the uni about the Crohns as he doesn't like it mentioned at all. Thanks again.

  • I think that is an amazing achievement to have passed a degree (whatever the grade) while having Crohns, which is enough to make anyone depressed. He has also done it without ending up thousands of pounds in debt, which is an achievement in itself!

    If he does not want to pursue the AS issue I would not push it, just focus on making him aware of how much he has already done, and that there are still opportunities. If he wanted to at a later date, there may be a way to retake a year of the course, or use what he has done as "accredited prior learning" 

    If he has not declared the Crohns up until now, it would probably be possible to get the degree grade reclassified by his Uni, but obviously he would need to tell them..

  • Thank you for your helpful reply. I think my son did ok until the last year which he really struggled with, including the project. He actually did applied computing. If he had had an AS diagnosis he wouldn't have declared it as with the Crohn's, so I don't know what the Uni could have done in this case. I did realize that there was a link between the two conditions. He is still very angry about having the Crohns nevermind anything else. Thanks again it's good to get other people's viewpoints.

  • There might be links between autism and inflammatory bowel conditions. Raising this I'm trying to avoid getting caught up in dietary debates and supposed cures, which would probably not help. But some people on the spectrum experience bowel disorders, and while that might be reactions to certain foods it could also be related to stress and anxiety accompanying the autism.

    My reason, however, for introducing the bowel conditions is whether the crohn's that he was diagnosed with, and seems to be easing, was actually something related to autistic spectrum.

    Any "condition" which restricts a young person from taking advantage of university and work freedoms is likely to be resisted. Students with AS diagnoses do with-hold their diagnosis on coming to university, even though it may have been flagged on their UCAS form, and universities cannot really intervene if a student doesn't seek help. Perhaps that happened with the Crohn's - he just kept it quiet.

    With-holding the disability prevents students getting support or allowances made, which can be a major set back in their courses if they are having trouble meeting the outcomes. On the other hand I can also understand the perspective of students who do this.

    One reason is not wanting to be labelled different or special needs. Another factor where AS is concerned is intervention. At school intervention involves genuinely sympathetic people who think parroting social stories and other childhood remedies is constructive past 16 - I have observed some students mortally in fear of the same kind of silly interventions at university, even though it just wouldn't happen like that.

    Do you know why he only completed his degree with a basic pass?  I have concerns that the social model of disability isn't appropriate to students with AS - they need more than a note taker, or extra time in exams. Also final year projects have requirements that don't make sufficient accommodation for people on the spectrum.

    A basic pass isn't normally a barrier, but on top of AS it might make things tougher. Degrees are somewhat over-estimated in value. Yes you need a good grade for some jobs or postgraduate study. But completing a degree even at pass is still a valid achievement, and as I have seen so often, students who just pass can often do better than their high flying contemporaries. To employers it means you had fun, and may have developed in other useful ways. People with firsts and upper seconds aren't necessarily good team players or able to go into a job successfully.

    It is different with AS - a double blow - a pass degree and the difficulties accompanying AS. I keep ranting on at NAS about this to no avail. There isn't enough of the right advice being given out to people on the spectrum taking on degrees. There are just too many bare pass graduates with AS and that's a failure of the system. There are aspects of degree courses that can be really hard on people with AS.

    I'm really frustrated that I cannot get across to NAS that there is a lot more to doing a degree when on the spectrum than the advice they currently offer. But until they, or someone else in a position to act, wakes up to their responsibilities, we'll just keep seeing this situation.

    It might be useful to know the degree subject, in that it may be possible to point out ways forward.

  • Thank you. That's very helpful. My son is indeed a very determined person. He would be a very dedicated employee if he got a job. I love him very much but I wish he would not blame me for his health problems. He is able to tolerate most foods. We all try to eat a healthy diet, except my son does like to eat the same things a lot. He used to have supplements but the GP has recently stopped them as the dietitian said he didn't need them anymore. We all exercise regularly and lead quite a healthy lifestyle. My son didn't even tell the university about his Crohns and will not discuss it. He hasn't told the jobcentre and they have said that he could do 90 minutes travelling a day which I'm sure would be too much as the stress could lead to a flare up. I'm sure that he thinks a diagnosis of anything else would be another label he doesn't want, although I feel that it might lead to more help for us all. Though I don't know if there is much help and support for adults on the spectrum.

  • Former Member
    Former Member

    Hi Mitz,

    Welcome to the forum. He may be reluctant to go for an autism diagnosis as he may think that this is going to give him yet another problem on top of those that he already has. Some people (like me) find the diagnosis liberating and that it explains a load of stuff. Other people find that it just adds to their woes and it doesn't lead to any obvious solutions. Perhaps he will come round to it in time?

    You can however start to make a difference by learning more about it and dealing with him as though he has autistic tendencies. Autistic people need encouragement and not criticism, we need space and time to think on our own sometimes. We can be fussy and awkward at times but we can also be diligent and hardworking and good at solving problems. There are lots of books and also lots of advice available here on this forum so do not be afraid to ask for help here on anything that you think might be relevant.

    He may not think that his degree is worth a great deal and may be sensitive about the grade that he got. It did, however, demonstrate that he could see things through and that he is not a quitter. It is good to be able to work out someone's strengths and to work with those rather than to keep trying to fix the things that he is not good at.

    One thing that has helped me is to get more organised with to-do lists and notes on my smart phone. I constantly use this to remind me to do things that I would otherwise forget as I am more than a bit scatty and forgetful. I use a windows phone but an android phone will have very similar facilities.

    He will need to be especially careful of diet with his Chohn's disease. Does he get advice on diet for this?

    Proper exercise is useful for everyone but it is also helpful for people with depression. A brisk walk or an hours cycle riding can do more good for the mood than any number of anti-depressant pills.

    If your husband is suffering with heart problems then a healthy diet and some appropriate exercise will have been advised by the doctors. Have you implmented a healthy eating regime that suits all of your families needs?