ASD behaviours in teen boy

[atriskacademic]

I am writing to ask for some help for my DS, aged 13. I will write in bullet points to avoid this getting too long.

Family background:

• Family: me, my husband, DS2 age 10, DS1 age 13. Both working full-time.
• Husband has some health problems himself – digestion related
• DS2 diagnosed with ASD age 9. Difficult times between age 3-8 due to encopresis (causing incontinence). Also suffering from mild hearing loss. Back and forth to doctors, limited NHS support, caused huge amounts of upset and extra work at home. He is now doing really well and has somewhat outgrown both the medical and the behavioral issues. However, during this time most of our attention was invariably on DS2, which I bitterly regret, but it was tough.

Background on DS1:

• DS1 didn’t show any major behavioral issues in primary. Struggled with spelling and handwriting. Dyslexia and dyspraxia assessments showed problems in some areas and not in others, so didn’t lead to a diagnosis. However, the dyspraxia assessment flagged up possible ASD. Didn’t pursue diagnosis as didn’t seem relevant at the time. But the dyslexic and dyspraxia tendencies may be relevant.
• DS1 now in secondary (year 9). Loves it and thrives academically. He loves the academic side of things. He has friends that he sees in school (many of them going back all the way to infant school), but doesn’t really socialise out of school unless I organise something. Generally not really interested in socialising and in clubs out of school.
• DS1 not showing any behavioural issues at school – he never even had a warning, suspension or had any bad behaviour marks. Even at home, his behaviour is not really bad – yes, he grumps at us (which teenager doesn’t) and he can be less than polite sometimes, but I think that’s largely par for the course.

Current issues with DS1

1. Increasingly fussy with foods. Loves pasta, rice and chips, but mostly plain. Luckily still likes fruit and some vegetables, but probably doesn’t eat enough of them.
2. He seems to be suffering from misophonia. Hears noises when there aren’t any (e.g. accuses me of smacking when I am eating my food when I absolutely don’t. Makes counter-noises to compensate.
3. He seems to be suffering from constipation and seems to be pooing in the shower (or pulling poo out of his bum) rather than the toilet. We know because we find poo in our outside drain. A year ago, we also had some issues with him smearing poo in his room. This seems to have subsided.
4. Have been to the doctor about this who suggested increasing fibre, but this isn’t easy given the limited diet.
5. Doesn’t want to talk to us about any of these things, denies there is a problem. We took him to a therapist, who he had two sessions with. Didn’t work as he wouldn’t engage and it is difficult to force him.
6. This all sounds hugely negative, but in all this, he is a lovely funny boy – just one who is a bit hard to reach at the moment!

Questions

• Where the hell do we go from there? We really need to sort the constipation / poo issues, but if he won’t engage with therapy / the GP there is little hope. Similar the ‘hearing noises’ issue – this is more on and off and not as bad as it once was.
• Some of these behaviours seem to be typical for ASD. However, not sure to what extent a diagnosis would help and whether we would have any chance of getting one anyway. We are much keener to address the problems.
• Should we talk to school? How could they help, if at all?
• How do we make him engage with us, therapy, the GP? My husband and I have different approaches. Husband thinks we need to get tough with him, I am more on the gentle side and trying to understand where these behaviours come from.
• Which organisations might be able to help? Autistic charities / helplines? We haven’t even got a diagnosis!

Sorry, this has got really long anyway! Thanks for all support.

Aside from the toileting and sensitive hearing I don’t see any other ASD type behaviours. Given your family history of digestive problems have these been explored properly?

@Savvysix1984 Many thanks for your answer. May I ask, do you have personal or professional experiences of the issues? Interesting that you are saying you don't see other ASD type issues. There are some other things I see, though I didn't mention them in my first post. For example, he is saying "I don't need any friends" and not really seeking out friends outside school (though I think he still has what one would consider 'friends' at school - he doesn't seem to be excluded from groups). He is also hyper focused on academic performance. If have no doubt that, if he was diagnosed with ASD, it would be 'highly functioning' - because to the outside world it's what he is. He won't need any specialised educational provision because he is coping, very well, and he will be able to lead an independent life.
As for the constipation issues, he has been to the GP - reluctantly - and they have felt his tummy and didn't seem too concerned. Though we know through the experience with our first son that GPs often have got very little clue on this - it took us a lot of fight to be referred to the right kind of consultant, via a reroute through private. I think our next steps may well need to be similar. We would like our son to consider medication, which helped sort DS2 out, but not sure which way to go (more fibre? disimpaction regime?).
I am not convinced though that the constipation issues are the whole story, and whether there is a psychological side to things too. The trouble is that it is so difficult to talk to him about it, and I can't exactly bundle him into a car seat any more and get him to a medical appointment like we did with our younger one. He is taller than I am!

Your post is really detailed. Please don’t blame yourself. I know it’s what Mums do.

It’s worth noting that children and young people who are ND can struggle more and face far more stress at secondary school.
As he is quite able he will no doubt be masking.

Any sensory and digestive issues will be made worse by stress, hence the need for his “ safe foods” often known as safe beige carbohydrates.

I’d make an appointment with the SENCO and discuss general concerns. He may for example need access to a disabled toilet. Constipation can lead to overflow. He could also have a toilet pass to get out of lessons if needed.
Discuss the history and diagnostic pathway.

You may find this helpful

https://novopsych.com/assessments/diagnosis/autism-spectrum-quotient-adolescent/

You could take results to the GP and or SENCO

Movicol will help with constipation. Look on the ERIC website.

This book is good for restricted eating though his diet isn’t too restricted.

https://www.amazon.co.uk/Autistic-Teens-Avoidant-Eating-Workbook-ebook/dp/1787758591?th=1&psc=1

@24Dogcuddler Thanks for your response. Yes, I do believe that his symptoms are getting worse / improving with stress. He was quite a different boy over the summer holidays. Though he missed school, he engaged much better with us and others around him and I think the tummy issues subsided too a bit. The 'hearing noises' issues certainly got better. There is a lot of pressure in year 9 now to select GCSEs etc and that might well get to him (though he doesn't show it outwardly).
I may make an appointment with SENCOs. We have spoken to them before, but that was more of a follow up on issues with handwriting etc. discovered in primary school than talking about these new issues. Access to disabled toilet may help in the sense that I don't think he is going to the toilet at all during school time as they are apparently disgusting (I know other kids have said the same thing). It might help overcome this reluctance, though I don't think he is actively withholding during the day. He also doesn't have overflow. We have A LOT of experience with this due to our younger son, and older DS' underwear has never been dirty.
Well, the ASD questionnaire is really interesting. He scored VERY HIGH on four out of five categories. His total percentile is 99.9, making him overall consistent with autism. I am not surprised to be honest.
I am well versed with Movicol... it's been our life for years! But it took us three years to get to a dose that helps but doesn't make things too runny. He is now on a high dose of Senokot with helped sort things. I must admit, I found ERIC of more limited help as we had to find our own pathway through and the standard advice often didn't help.
I might buy the workbook for myself! He would never read it I am afraid... looks way too childish for him... he reads big history encylopedias.

Of course you are experienced with the bowel issues, sorry. Sadly us too over many years with our youngest.
I should have added that I have experience personally and professionally. (autism, Dyspraxia ARFID, SEN, constipation and toileting needs etc)
Glad the questionnaire was helpful.

The book is dedicated to our youngest DD. Anything by Dr Elizabeth Shea or Dr Gillian Harris is helpful.

For general sensory needs The Out of Synch child is quite text book like.
For interoception look at Kelly Mahler.

I think the opposite. I am autistic (and also have ADHD). He sounds like me.

I agree with PP about Movicol - that’s what I use.
Also extra water. I have a VERY high fiber diet and still have constipation. My ADHD psychiatrist actually said that a high fibre diet with ADHD can make constipation worse and she advised me to reduce my fibre intake. I don’t know why this is the case but suspect it might have something to do with a connective tissue disorder which is comorbid with ADHD. I think I have this too. Also remember that most autistic people (or 100% it my very experienced consultants psychiatrist is to be believed) have ADHD too. That is a more useful diagnosis because it comes with medication and that medication is very effective.

Parenting - what helped with AuDHD DC2 was to make them feel like they had some control. So, instead of “we”re going for therapy next week”, what worked better was something like “would you prefer therapy next week or in half term?”. I reserved getting tough or angry for very critical situations- like recently DC2 got into some legal bother (young adult) and I had to lose my temper to make them contact a solicitor.

Diagnosis - absolutely definitively- they help by giving you a deep and broad understanding it the issues. You won’t get that level on your own. once you understand the issues, it is then much easier to work out how to tackle them.

School - no harm in talking to them but they may be fairly clueless. Neither of Dc2’s schools noticed their dyslexia, ADHD or autism. In fact, they gave them
loads of screeners for loads of different conditions because we all knew there was something wrong but we didn’t know what. The result of all was ‘normal’ but that is common in young people because they are not very self aware especially if they are autistic. So the school, unwittingly, did the opposite of helping,

charities - start with National Autistoc Society and ADHD UK by ask around in your area to see it
tbere are any local charities or support groups.

Perhaps he doesn’t want to socialise as he has bowel issues. Constipation causes leakages which would be really embarrassing for him.

have you got him on laxido or something similar? He sounds like he’s having a nightmare with it.

Thanks all - I really appreciate it! I really don't think he has leakages - he discards his underwear in front of the bathroom when he has a shower and there is just no evidence of this.o
My husband and I have decided that we will have another go at the medical route to find out what is actually going on. I don't want to start on Movicol or Laxido before knowing it is the right thing as it made things worse for my younger one before we found the right maintenance dose. Perhaps he needs something else, e.g. something to make the transit quicker? He does go to the loo to do big poos occasionally, but just not often enough I think.
So we will ask for a referral for more tests from the GP, quoting family history. Hopefully this does then give us a route. Might talk to the school too!

Ops update provides some more information regarding lack of motivation/ interest in seeking out peers, but from a diagnostic point of view bowel issues (though often co-occurring with autism) and sensitive hearing , plus potential limited social motivation on its own wouldn’t meet criteria especially if school aren’t seeing any difficulties.

Not saying he isn’t autistic. Ops further update about the screener indicates there’s lots of potential symptoms not shared here.

I work in a neurodevelopmental assessment team.

op arrange a meeting with the senco, share your concerns (be very specific) and see if they share/ see anything. It sounds like he’s the type of lad who might not be open to ASD assessment at this stage, and at his age it’s important he’s on board or at least willing to explore.

@Savvysix1984 Thanks for this. Previously, the SENCO never had any concern (probably because there are no behavioural issues at school). Yes, getting him on board will be tricky. To be honest, getting help for his issues is more important at this stage than the assessment.

Sorry, I don't want to be opaque re symptoms... there are other issues going on too, though none as severe. It would just become an essay!

Thanks all for your input - it's a step forward!

well nobody on here can ever put enough info for anyone to say with much certainty whether it is autism or not…… but the OP’s DS sounds strikingly similar to me. like him, I was doing well at school and had friends…… BUT I don’t understand body language, facial expressions or any non-verbal communication, I can’t read between the lines and I don’t understand the unwritten rules of social interactions. It is hard for a parent to realise all this.

I don’t think the OP has said anything about special interests, stim-type behaviour, a strong drive for sameness. Not that much about sensory issues either.

A-Levels went to pot for me, despite a string of As at O-Level…. Demands on executive functioning exceeded my capacity. I would have been ok if I’d had the understanding (from the diagnosis) that I now have plus a little bit of support.