Adults with Asperger's or parents with young adult DC with Asperger's- please help me

[MargoLovebutter]

DS is 19 and has had a diagnosis of high-functioning ASD /Asperger's since he was 7.

He started at uni in September and it hasn't been plain sailing for him. He is fine academically (despite some quite severe SLDs) but is not a good judge of other people, gets social cues wrong and has quite high anxiety with a dash or paranoia thrown in.

He also has a diagnosis of severe IBS, which is proving particularly troubling and he has lost quite a lot of weight, feels nauseous in the mornings and is also having great trouble sleeping.

The help I need is twofold - please!

Firstly, if you suffer from Asperger's and find it incredibly difficult to identify your own emotions - can what you are feeling manifest itself as physical symptoms?

Secondly, if you suffer from Asperger's, is there any form of counselling or therapy that can help with the anxiety or any of the other issues?

I am so worried about DS and can't work out if the deterioration of physical symptoms is related to stress and not coping at uni - or if it is completely separate and his bowels are in more serious trouble than originally diagnosed (he does have a referral back to gastro for more investigations).

Any thoughts / help / suggestions very very welcome.

Hi OP

Adult with Aspergers and also a full time Uni student.

I also have IBS that flairs up dramatically in times of severe stress/anxiety.

Does his Uni have a counselling service? What are the pastoral support there like?

Hi RolandDeschainsGilly, thanks for responding. He has a Disability Support Officer at his uni and I believe there was the offer of counselling - but he hasn't taken it up so far. He absolutely refuses to believe that he could be stressed - which is utterly absurd, given that he's had to change halls and that he has exams going on at the moment. I keep saying to him that any normal person would find that stressful but he cannot accept this to be the case.

He could be someone who thrives on stress or simply doesn't find those situations stressful. Why not believe him?
Changing halls was surely a release of stress. And exams, you can be keyed up for them, but not stressed by them, iyswim.

Yep, have a young adult with Aspergers who is a full time uni student.

Our story is a bit different as while they do have a lot of challenges they have a solid base of friends from school who all have Asp, are doing a course with a student population with a high proportion of diagnosed Asp and they live at home (where we live it is only typical to live on campus in student colleges if you come from the country, interstate or from overseas). Given all of this their social issues are minimised.

In our case I have found stress is not their friend. When getting to the upper years at high school they did not handle exam stress at all well, it seemed to cause mental health issues they did not normally experience that seemed unrelated to Aspergers - periods of disorientation in regards to location/time, complete confusion, extreme distress. We had to come up with strategies to avoid the exam stress!

Yes, they work with a clinical psychologist who specialises in ASD when needed. Not for social skills but more when some aspects of their issues impact household life to the extent we signal they need help as we can’t put up with living with it- more so their OCD and GAD. Of course these things tend to get out of control in periods where there are stressors and we consider these times to be blips and we are understanding but if it extends on or gets even worse where it’s affecting the household adversely we insist they need to go get help in addressing these things back to a level we can live with. The other option is they move out and no one wants that.

They also take meds. This helps. A lot. As they are at uni they are still under the care of a developmental paediatrician. When they finish uni they will be transferred over to a psychiatrist who specialises in adults with ASD and/or ADHD. This is really critical, my child would have never made it through school let alone into a competitive and challenging uni degree if they did not have this service/support. We pay for this service privately. Not cheap but worth every cent. We have had the same dev paed since they were 6yo so they have someone who is really familiar with them and specialises in kids with these profiles.

As for physical manifestations of stress, my child has never had this, it’s alwsys been mental manifestations. However one of their friends does become physically affected. All that aside neurosurgical people often have physical manifestations of stress, it’s really very common, so I can’t see why it would be different for those with Aspergers.

Thanks HeathRobinson. FWIW, I haven't disbelieved him when I speak to him. I just listen and am sympathetic.

So would you be thinking that his bowel issues are much worse because of something else then - not related to the stress? What about the insomnia?

Thanks HoppingPavlova. DS had a counsellor at school and went to a special school that gave him huge amounts of support, which of course he is missing now. He's never had proper psychological help though.

He also gets the disorientation with location / time and extreme confusion. I didn't know that was a 'thing' as such.

I feel like I am providing huge amounts of remote support at the moment by telephone, which is hugely draining and worrying for me. A part of me desperately wants him to come home and try and find a uni that he could commute to on a daily basis - but I know that isn't what he wants.

I’m sure others will disagree but I found school counsellors to be completely useless with anything ASD related. Maybe because I compared them to clinical psychologists (my son first saw one at 6yo, same age as they saw dev paed)? They seemed like chalk and cheese in regards to ability and that was with several different psychologists and several different counsellors. Don’t get me wrong, I firmly believe counsellors have their place, I have another child (no mental health issues but physical disabilities) and they have seen several different counsellors over a number of years and it has been worthwhile.

I have ASD (informally diagnosed part way through process but not finished yet) and anxiety plus IBD as opposed to IBS.

Yes, frequently if I have a lot on which causes me to fret a bit, my bowels go awry very quickly. It's often a sign I'm more 'anxious' than I realise. Not necessarily stressed and I get cross if people think I'm stressed as it feels like I'm failing somehow. I might have a lot going on and a lot to think about but I will get through it.
Could that be the case with your ds?

• sorry, previous post should have been neurotypical not neurosurgical, autocorrect fail ....

I have aspergers and ds2 has as well. Ds1 has pda. The single thing that has helped the most has been anti anxiety medication. It's transformed the two dcs and it helps me to cope with work and general life. Counselling will not work due to autistic brain wiring. Sure, it's nice to talk, but it won't help long term.

Thank you AornisHades - yes, I believe he sees admitting to being stressed as an admission of failure. I'm not entirely sure why, as I certainly wouldn't be judging him.

localfluff that's interesting about the anti-anxiety meds. Is that a long-term thing, or a sporadic thing. How do they work?

localfluff - that's interesting about the anti -anxiety meds and the fact that you say talking therapy doesn't work for ASD people. We have a 14yr old DD with ASD who we can only manage to get to school about 25% of the time. The smallest thing upsets her and she just closes down. She has stopped doing all sorts of activities in the past, all of which she has been really keen on! All CAMHs have offered is some story work with a speech and language therapist!

I have 2 children / young adults with Aspergers..DD is 21 (diagnosed at 15) and DS is almost 19 ( diagnosed at 9 ) . Both attend the same uni and both suffer with high levels of anxiety although completely different types of anxiety. DDs main issue is social anxiety whereas DS has huge issues with generalised anxiety, stress , OCD etc. He always gets physical symptoms of tummy ache, feeling sick etc when he is stressed BUT I have to say, just like localfluff they are both on anti -anxiety meds for the past few yrs which have transformed their lives really and have enabled them to function far better. Their anxiety has become far more manageable . Mine both take an SSRI..both take a different type ...and the idea is that after a few yrs or whatever they can gradually wean themselves off the tablets and stay off them or if needbe go back on them again for a period and back off them again after another period or they may need to take them longer term ..it depends afaik on each individual. Indeed, DD stopped her meds 18 mnths ago but has since gone back on them again as she realised taking them made a big difference to her anxiety and general wellbeing.
While these drugs may get a bad press etc they have truly been lifechanging for my 2 children and have really stripped their different types of anxiety right back to manageable levels.

I don't always know when I'm stressed or anxious (or hungry etc). Sometimes I only realise how wound up I was before when I'm calm again.

According to a disability assessor, autistic people often live in a permanent state of anxiety, it's "the norm" so it's hard to see it.

So "I'm not stressed" doesn't always mean much, but I don't know how you convince someone either sadly. My IBS has only gone as I've grown older and life has grown more controlled.

Food could be down to "embarrassing" factors too - my autistic dh lost lots of weight in his third year because he didn't like cooking in a shared kitchen.

Can you pass some protein shakes and biscuits something along? (Things that can be prepared or eaten in secret?)

The meds are sertraline which is an antidepressant, but has an anti anxiety effect as well. Just a low maintenance dose for as long as is needed. I'm on them long term, the dcs are reviewed regularly. They really help and I can't recommend them enough.

NopeNi thank you for your input. I think you are right about him living in a permanent state of anxiety. Fortunately, he happily cooks himself an evening meal in the shared kitchen so that's not an issue. However, he says he feels too nauseous in the morning to eat until lunchtime, so he is only eating two meals a day. The GP has prescribed him some anti-nausea medication which makes him feel a little less barfy in the mornings, but he still won't eat anything.

MrsSparklyLady and localfluff thank you for the information about the SSRIs. I didn't know that was an option at all. We've had bugger all support from GPs or CAHMs over the years, so it is good to hear that there are some meds that could help.

local and Mrs How did you get the sertraline for dc? Dd 12 is diagnosed with ASD and has incredibly high anxiety. Consultant Paediatrician doesn't prescribe it. GP doesn't. She's on a waiting list for mental health help.
I have had sertraline in the past.

A private paediatric psychiatrist prescribed for ds2 and he saw ds1 on the NHS as he was under camhs already.

I'm autistic (and a student though many years older than your Ds!) and wondering if he's had a DSA assessment firstly as it sounds like he has a lot of unmet needs. There should also be a disabled students service of some sort.

The doctors totally don't get how much autism causes severe anxiety yet we're expected just to put up with it and appear normal and do normal stuff. It's impossible. Counselling, cbt, relaxation exercises will not work as the fundamental brain wiring is set for high anxiety levels. It's cruel and unreasonable to expect autistic children and young people to cope when meds are available which can help. Nobody likes the idea of their kids having to take meds, yet they wouldn't worry if they had to take anti seizure meds or insulin.

HardAsSnails he has had a DSA assessment, but there seems to be very little on offer. What kind of things do you think the uni could be doing? I have so little idea of what best practice looks like or what could be available. Thank you

Thanks local. Totally agree about the reluctance to treat anxiety especially with autism.
I have found cbt useful for understanding intrusive thoughts with OCD. Helped me to understand what was happening biologically.

Margo I get 30 hours of specialist mentor a year, a load of software, paper and printing costs, and then some extra stuff through university services (extra library stuff, automatic extensions, advance copies of lecture slides/notes, which don't really apply as I'm a research student). I know of others who've had way more.

HardAsSnails he gets extensions, access to lecture recordings etc and via the report on his SLDs, he gets access to some DSA funding for a laptop, software etc. What he doesn't seem to get is any specialist help for the ASD stuff. If you know of anything other unis do, it would be really helpful to know, as he could request it, or at least explore those things with his uni.

He really should have a mentor and possibly a study support skills person too.