How to help 22 year old DS?

[LactoseTest]

DS is currently on a leave of absence from uni, having done 2 years of a 3 year degree. He dropped out after the autumn term in his final year because he said he wasn’t sleeping and there was unable to study effectively.

To be honest, he has had problems getting to sleep for a long time. Probably since starting secondary school. He is unable to get to sleep until about 4am in the morning and is therefore tired and not functioning well the next day. We paid for him to be seen at a sleep clinic. They established he did not have sleep Apnoea and advised on good sleep hygiene. However, the consultation did not lead to any improvements in sleep. DS buys Melatonin online but this doesn't seem to help much either.

I have long suspected that he might be suffering from inattentive Attention Deficit Disorder. Since hitting secondary school, poor organisation has been a massive issue for DS. Teachers repeatedly commented on his poor organisation over the years: not having the right books for the lesson, forgetting to do homework etc etc. I now regret not asking school to look into this further. DS pretty much sailed under the radar at school as he is smart and wasn’t badly behaved in lessons He has other issues which could be indicators of being on the neurodiversity spectrum. For example, restricted diet, hyperfocus on areas of interest (video gaming), lack of facial expression, social anxiety/difficulties with social interaction.

The problem at the moment is that every day he seems to think that he has a new medical problem. He has complained about pain in back, and tightness in throat. He now believes his body cannot tolerate lactose or Calcium, so the range of food he is willing to eat has reduced even more. There are so many other things he thinks are wrong with him (too many to list). He has repeatedly booked medical appointments with the GP, has spent hours waiting to be seen in A & E and has booked many appointments to see private physios. One day, I looked out of the window and an ambulance arrived (called by 111 after one of DS’s calls). Of course they did not find anything wrong with him and felt his throat was probably tight due to stress.

The problem is I’m not quite sure what help to get for my son. He is convinced that he is suffering from multiple health problems. I believe that his problem is with his mental health and not his physical health. He thinks that I am being unhelpful by not believing that he has real health issues.

I have encouraged him to get a job, which I feel will take his mind off constantly worrying over his health. He has just started a part time job in retail, which I hope will help. Better than wafting round the house doing very little.

He is due to start his final year of his university degree in October and I am hoping that he will be ok to go back.

Has anyone experienced anything like this and how did you tackle it? Any ideas would be great. Sorry this is long.

Has he told the GP about all his ‘illnesses”?
Has he got a counsellor, or can u arrange for him to see one?

@Skybluepinky Many thanks for your reply. He has consulted GP about his many perceived Illnesses. He has been offered various types of medication for back pain. It doesn't seem to have resolved anything in his eyes. He was previously taking Naproxen which he said helped a little. He was last given Amitriptyline which made him very anxious and he therefore stopped taking it. Apparently it can have this effect on people. He had consulted a private physio about back pain about a year ago. It was a sports physio as DS felt that he had injured his back doing weights. The physio gave him exercises to do, but DS still maintains that his back hurts.

DS complains of pelvic pain and consulted a private physio specialising in pelvic floor pain recently. The physio did an ultrasound and said they could see the muscle was tight and advised him to drink less fluids and do some exercises. The physio said that this problem was more typical in older men and cancer survivors. DS also went to the GP about pelvic floor pain but the GP said it was impossible that he could have this type of pain.

He has been sent by the GP for multiple blood tests, but none of them have ever revealed any problems.

Thank you for your suggestion of counselling. I have offered to pay for DS to see a counsellor this evening and he is currently thinking about it. I feel that this may help. I just need to find a counsellor for him now. This will be the next challenge!

I would pay for him to see a psychiatrist for an ADHD/ND assessment, stop treating the symptoms and try to find the root cause.

I could have written almost exactly this about a family member of mine. Started & quit numerous university courses & jobs. Has struggled with mental health for years & has only recently (in the past couple of years) sought help.

Since covid they have developed a severe case of health anxiety & they are now ill in one way or another on a daily basis, as well as dependent on painkillers. They have called multiple ambulances & made numerous A&E visits, often with 'heart attack symptoms'; the doctors have never been able to find anything physical wrong & believe it is all down to mental health. It is enormously stressful & exhausting for all involved (including them of course).

We are not past it so I can't guarantee something that would work. The only advice I can offer is to encourage seeking mental health support; perhaps find links for him to make it as easy as possible? He may not be open to it straight away (my family member wasn't) but it all stems from there I think. I continue to support my family member as what else can I do, but I can no longer prioritise them above everything else (I have 2 young children), as it was not good for my mental health or fair to my children. I understand it must be different with it being your son though.

Is he hyper mobile? It's very common in neurodivergent people. That could be an underlying cause for his pain.

I agree with this 100%.

He could well have ADHD, some of the things you mention do sound very much like my Dc1 who has mainly inattentive ADHD.

Some of the other things like sleep and food sound like my DC2 who has ASD.

It's interesting that you mention lactose as Cow's Milk Protein Allergy seems to be more common in people with ASD.

Could he have CMPA and ARFID?

I'm not sure how you help him to stop focusing on his health but a good place to start may be to show him the article on inattentive ADHD and start discussing the possibility that it might be an issue for him?

My DS was diagnosed as an adult and the process was fairly quick. What took the longest was actually getting him to sit down and fill in the forms.

If he was diagnosed with ADHD/ASD he should be entitled to DSA which can help with providing software, equipment and mentoring to make Uni a bit easier for him.

He might also be able to get accommodation suitable for students with ASD.

I think it's definitely worth having a read and then trying to have a chat with him about the possibility of being ND

Thank you all for your helpful posts. I have read and appreciated each and every one of them. They have given me a lot to think about.
I will try and discuss getting an assessment from the Oxford Adhd & Autism Centre with DS.

Sorry to hear you are in a similar situation. It's not easy to deal with at all.

My DS did the ADHD assessment through his GP. It might be worth speaking to them first as they know the struggles he's been having?

This is a good idea. Thank you.

I am not aware of DS having any hypermobility in his joints. I daren't ask him about joint mobility in case he starts to obsess over it.

Lots of good long term suggestions above.
As a quick instant suggestion to add to the above I would recommend downloading and using the Headpqce app or something similar if he is willing. A bit of mediation helps all manor of things.
The breathing exercises on there are great and the short videos to relax you before bed are too. He may well like the long sleep podcasts too.
He is very lucky to have you supporting him. Make sure you look after your own mental health too.

Sounds great. I will definitely mention this to DS. Thank you!

My youngest is like this. Sleep helped. What dosage is he on for melatonin? DD14 after a bit of fiddling now can get to sleep earlier. She's been like it for as long as i can remember. She too is constanly got new medical illnesses. Kidney issues, dermatoligist wanted to do a biopsy i thought great that will stop that one - but no refused due to needing stitches. We suspect high fuctioning autism - was semi diagnosed lol due to terrible lack of medical people here it never progressed so i just googled and worked with what i studied. Because there's no distraction of a night that's when the brain is in full swing. We had tried every single thing but nothing worked. High dose of melatonin gets her to sleep before midnight now and then i find her anxiety's ease.

Sounds more like autism to me, especially with the lack of facial expression. The other things you mention can also come under autism but people seem to often jump to adhd first. Anyway. Please do ensure you book an assessment with somewhere reputable that will assess for both conditions (he may have both, they overlap). It's really important he understand himself well. See the GP for sure but make sure you don't go to a psychiatrist who is prepared to diagnose ADHD within an hour and prescribe medication. Unfortunately there are still too many doctors offering this very poor practice.

One thing that might help is what we did with DS, once he'd read about inattentive ADHD and was waiting for an assessment he tried to do things that helped to regulate him. So things like running, the C25K app is very good, meditation as mentioned by a PO and trying to eat better, although this can be difficult if he has ARFID, he may need a good multivitamin and mineral supplement.

I found the How to ADHD videos useful when we first were looking into the possibility of DS having it.

I agree with pursuing an assessment for ADHD. Knowing what the issue is can be very helpful irrespective of any of the "treatments" for it.

DD found her diagnosis a great relief. DS is the same age as yours and is about to start the assessment process. He was diagnosed with anxiety in his second year at Uni and takes medication for this. As an aside, both found a weighted blanket really good for sleeping (just the mid-weight one from Dunelm).

If he does get a diagnosis of ADHD, he should get adjustments for exams (extra time, short breaks etc'

How are you both today @LactoseTest? Have you managed to discuss any of this with him yet?

Thanks for asking! DS has said yes to having counselling and is going to look for a local counsellor online. He prefers the idea of face to face counselling rather than over Zoom/Teams. I said I will pay for the sessions when he finds someone.
He didn't like the idea of bring assessed for Attention Deficit disorder. He was assessed as having Dylexia and elements of Dyspraxia by an assessor recommended by his University, so he thinks that this is the neurodiversity which he suffers with. We paid for this assessment a few years back. I don't think the assessor was qualified to diagnose either ADD or ASD. At the time, I was surprised by the Dyslexia diagnosis as he didn't seem to struggle to learn to read as a child and his spelling is OK. The report talked about auditory processing issues and slow reading speed. He has been awarded extra time for exams bases on the assessor's diagnosis. When we booked the assessment we were expecting a diagnosis for Dyspraxia, but not Dyslexia.
However I still feel he has indicators for ADD and or ASD.

Thank you for the weighted blanket suggestion. Sounds like a good thing to try.

Thank you for the weighted blanket suggestion. Sounds like a good thing to try. My DD has one and it's really helped.

If he has Dyslexia, has he applied for DSA?

He hasn't applied for DSA as he doesn't think he needs any specific financial support at present. He was delighted to be awarded extra time in exams. He has already got a laptop and he didn't feel he needed any special software to help him. We couldn't think of anything else to ask for that DSA might cover.

Anxiety medication for the health anxiety definitely helped my young relative. Another got a private diagnosis for adhd at the age of 20 and is now on medication that he says has transformed his life. He just feels so much calmer as his head is quieter.