To think my ds might be autistic

[Lotus376]

My ds6 is showing some behaviours that are concerning me. My dp and I have thought for a while that he is possibly on the spectrum but when I have tentatively broached the subject with his teachers it's be largely dismissed.

School is very much a safe space for him, he loves routine and thrives on the predictability of it. However at home things are very different, and if we ever do something that is different from every other day he really struggles. We're trying to decide whether to push for an assessment, but I worry that we won't even get as far as a referral since his behaviour is so different in school. Some of the things that are ringing alarm bells for us are:

He is very particular about the feel of clothing. Sometimes it can take me 20 mins to get his socks on in the morning as they don't "feel right" which makes him very distressed. Shoe shopping for school is a nightmare as he hates the feel of most shoes, with each pair that doesn't feel right he gets more and more upset, usually culminating with him screaming on the floor.

He's also very sensitive to smells and noises. He gets very upset if things get too loud or if he smells something he doesn't like, particularly sausages. He came home crying the other day because he was sat next to a child eating cocktail sausages at lunch, he didn't eat his lunch because the smell "made his tummy flip"

Any changes to his routine causes him a lot of anxiety. Non-uniform days, school trips all induce meltdowns in him the night before. He won't ever show this in school though because it's very important for him to be "a good boy".

Parties are really tough for him. He wants to go to each one he's invited to, however we usually have to leave with him very distressed as he can't handle how unpredictable they are. If there's loud music playing we have to leave straight away.

He gets obsessed with a particular topic and it's all he can think about. The latest obsession is Michael Schumacher. It's all he will talk about at the moment, any question he asks me will be related to this topic. If we're having a conversation he will find a way to bring it back to his obsession.

It's so upsetting to see him regularly becoming distraught with everyday things that most children can handle. I have a younger child and things just seem so much easier for her, she takes everything in her stride and rarely become inconsolable like my son. The reason we're considering asking for him to be assessed is that we don't know how to help him. We want him to be able to cope with life and all its unpredictability. But since he is so controlled in school I worry we'll get nowhere! Does anyone have any advice?

That does sound like there are several red flags for autism. I would be tempted to pursue a diagnosis. I don't know how him masking so well at school will impact on your ability to get a diagnosis though.

Share exactly this with the school SENCO. Discuss "masking" with them.

Also go to the GP with this. They will send school a questionnaire to fill in, plus one for home too. Make sure SENCO is on board - more likely to have success going via them than the class teacher if he is v good at masking at school.

Make v clear to everyone the adjustments you are making at home to try to support him - e.g. all the preparation you do with him the week and then day before a trip so he has already rehearsed it in his head and can cope better. (Assume you do this kind of prep to ease him into changes - if not, consider doing so.)

When did he learn to talk and what were his first words?
What are his favourite toys?
Does he have friends? Do they play together and if so what sort of games?

if he did get diagnosed what would you do differently?

A diagnosis is really important for the future in school, university and the workforce. Even if the OP uses all the recommendations for autism, no one else will unless there is a formal diagnosis of autism

He sounds very much like my son who has a diagnosis. How old is he? I’ve found the older my boy gets his ability to mask is declining so school do see some of his traits now where as previously they didn’t. It was one teacher who noticed which helped get him assessed. In my area without schools backing it’s hard to be accepted onto the pathway.
I do think getting a diagnosis helps as it helps him get the right support. He still very much goes under the radar still even with a diagnosis because he’s quiet and academic.
good luck!

@pantypant that isn’t why I asked those particular questions.

I would say it would be good to have an assessment. The wait here is about 2 years at the moment. We went private.

What I will say though is the schools input is really highly regarded as part of the data collection aspect, so I would encourage you to engage with the school first to ensure they are not dismissive.

Sounds very similar to my autistic boy too. He could mask through school when he was young, but at home and outside school would struggle enormously. Like @Luckymummytoone says, my DS also struggled to mask the older he got, and when he returned to school after lockdown everything fell apart and school suddenly saw all the behaviours we'd been struggling with for years.
He now has a diagnosis, got great support in primary and is doing surprisingly well at secondary so far. Keep pushing, getting a diagnosis is not dependent on the school. Good luck.

@TinTinCheeseHat this is when my son totally broke down too, after lockdown. He was on the pathway before then too but it had a huge impact.
Glad to hear your boy is doing well in secondary… It’s something I’m dreading with mine!

He sounds just like my daughter until she was about 6, even down to the socks and shoes (she still will only wear one model of shoe and I’ve had to buy the same one in a bigger size each time) but she’s now much more relaxed about stuff and just outgrown it I think.

Just an alternative view.

When you go through the diagnostic process for asd the school will be asked to contribute to that - usually in the form of a questionnaire. Don't worry if they haven't noticed anything - my son was diagnosed after covid and was in secondary so most of his teachers had barely met him, let alone noticed any autistic traits - asd is not like adhd where behaviour has to be recorded in 2 different settings.The information you give and their direct assessment of your son will carry more weight.

Your GP should also be able to refer for assessment if school aren’t supporting. x

That sounds very similar to how my DS was at 6 and similarly all my concerns were dismissed by the school because the academic side of things wasn't causing them any problems. You can and should push for a referral. In our case the school became much more cooperative once DS reached y5 because they knew then that the processes would take so long that it wouldn't be their problem to do anything about it by the time all the assessments were done. However on that timescale it meant we didn't have a chance of getting an EHCP done before the senior school application deadline. If I had my time again I would be fighting harder to have a proper assessment in y3. The problem is that many signs if taken on their own are just within the range of what you might expect from an immature kid. It's only with a full assessment that all the different aspects can be slotted together to see the pattern, and that takes a professional.

It is worth pursuing.

In the mean time:
https://sensorysmart.co.uk/ This was a lifesaver for me. I went from carrying DD3 into school with her socks and shoes in my hands, to being able to dress her. They are expensive but because they are seamless they last quite a while. DD3 had both the pants and the socks.

With DD3, I got so frustrated that I asked her to go through her drawer when she was 3. I told her that if she could tell me why a t-shirt was uncomfortable, I'd take it out. She pulled t-shirts out saying "This goes under my arms; this has a line on it here; this is tight.... She knew exactly why she didn't like them.

The reason we're considering asking for him to be assessed is that we don't know how to help him. We want him to be able to cope with life and all its unpredictability. But since he is so controlled in school I worry we'll get nowhere! Does anyone have any advice?
@Lotus376 I think it’s a rather natural thing to be concerned about given your description but assessment won’t help you know how to help him. (It’s very important for other reasons before people start assuming I’m suggesting not to pursue it if appropriate for him.) The support you need to put in and the coping mechanisms he needs to learn can be implemented without a diagnostic and in all honesty won’t hurt anyone anyway so just crack on and do what works. He may not be able to cope with the unpredictability of life ever. Not all deficits can be resolved. That’s the nature of disabled. On the whole you can help but not cure. It sounds like he finds school easier?? If so what are they doing that the rest of his life isn’t? The SN boards are full of parents with children of all sorts and a plethora of solutions. He’ll always be the boy you have now whatever dx or no dx he needs.

Definitely speak to a sympathetic GP and find out what the process is in your area.

He sounds very much like my DD12 who was diagnosed last year. Never any concerns raised from school but I just knew. The first GP I saw was quite dismissive and reluctantly put a referral through, but it came back rejected as there was no supporting evidence from the school. I went to see another GP who said he'd put the referral through to the wrong place (CAHMS) when it should have gone to the local child development centre. That time we eventually saw a paediatrician who put her on the pathway.

They did speak to the school at some point...bear in mind that it will probably take a couple of years by which point your DS might well be exhibiting more signs at school...even with masking there will be things the school can pick up on. Request a meeting with the SENCO.

Sounds similar to my ds at uni and 19 (diagnosed with Autism when he was 11) at that age.

He did enjoy the routine at school, was considered academic and serious at school. He did have social issues at school but not enough to raise serious concerns. But his sensory issues around food, smells, clothing, and washing caused lots of stress. For us all. He also hated routine changes, melt downs on trains were regular.

His sister is 19 m younger and was diagnosed with ASD aged 8 so it was her diagnosis which brought us a better understanding of what was going on with Ds. He struggled more in years 6-8 at school so we got the required evidence from school at that point.

DD never really masked at school certainly not in primary school so the school raised concerns to us. We just accepted who she was and didn't realise she could be autistic. Her diagnosis made us look at ourselves, our quirky / awkward parents, siblings etc. etc with a better understanding 😁 so was revelatory for more than just DD

So speak to your GP see if you can get a referral started.

We are just going through the assesment process. It took 2.5 years to get to this point after being referred so it’s worth asking for the referral now even if you’re not sure? No harm in getting it checked, it won’t change your child, but possibly the support you can get for him

This sounds like my ds whos 5 who has a diagnosis at school hes like your son who loves to be the "good boy" and then when he gets home he explodes every single night this year he's gone from one PE day to two so that's setting him off until he gets used to the new routine. I would Pursue a diagnosis and speak to senco about it.

We’ve had this with our daughter. They can mask up to a point, then it all falls apart and you end up on the assessment pathway.

Sounds very similar to my child. Bright as a button, social and sensory is where it is most obvious. I have cut many labels out of clothing, don't even buy tops out of the sportswear fabric as hates the feel. Socks feel weird, tops with necklines at a certain height feel weird, certain smells, baby cousins eating make him feel sick etc etc (I'm with him on that one lol).

School might have observed some behaviours too. Ask and get them to make a note. Make a GP appt and have a list ready. Then get ready for the looooooonnnng wait for an assessment. There are lots of resources out there to help in the meantime, as all an assessment will do is confirm yes/no. You as parents probably have a much better idea of what his needs are and how to help, especially with some reading up, joining local support groups etc.

Its helpful to focus on how you can help make the world a bit easier for them, rather than force them to fit in.

Maybe first see if you can get an occupational therapy assessment around his sensory needs. Then you could use the report/OT to help broach the need for an autism assessment?

I agree with PPs, if he is masking ASD in school, it will become more apparent as he ages. The differences between the ND child and NT children grow and also become more complex to mask, so you start to see little 'tells' as well as (unfortunately) academic work starting to suffer with a mismatch between how able a child appears in person and on-paper attainment. I found a good starting point with school was pointing out the behaviours that had been noted in DD's school reports. Individually, each trait was fairly innocuous, but added together across different subjects and different reports it gave enough indication that further investigation was needed. The team assessing ASD are very aware that behaviour at school can be very very different to home, and I found they had already picked up on the same discrepancies in DD's reports and attainment that I was planning on raising at her assessment as supporting evidence.

In the short term: have you looked at seamless socks and 'barefoot' shoes?

Sounds very much like my eldest. The traits were there as a toddler but the anxiety that comes with autism exploded once he started school. But my son can’t mask and the school were very aware (in fact they were the ones pushing an ASD diagnosis, the paediatrician was the one who took convincing!). I’d certainly ask to speak to the SENCO. I’m not sure if they would/could be involved at this stage, but my HV was fantastic with both my boys when I raised concerns and was the one who initially made referrals.