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.

Parents
  • 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.

Reply
  • 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.

Children
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