Starting school - boy with mild ASD any tips and support

[gfy678686]

Posting here for traffic.

DS is starting school in September and I suspect he has a mild form of ASD. It runs in my family and many of the 'issues' he has are very similar. So he needs routines, has zero emotional intelligence, gets overwrought and can hit, has a 'disorganised' mind - is interested in being with other kids but often has conflicts etc. It's mild enough that I assume it won't get documented but my concern is that he will just get labelled a 'naughty boy'.

I didn't start school till I was 7 so had much better control over things by then. Plus, in typical girl fashion, I was all about mimicry so even though I had massive meltdowns at home - when at school, I was pretty good at masking it and was never physical etc. DS is similar but is obviously still younger and I am getting a bit anxious about how he'll manage. He currently goes to a small nursery and it's ok ish.....but not always smooth sailing.

Does anyone have any tips, ideas that have helped you when your little ones started school?

Tbh op he sounds a lot like my DS - everything picketingpanic has said is true for him, he also loves to play with others, is very free with hugs (too much so), and his speech is excellent -was talking in full sentences from 18mo. He received his autism diagnosis aged 5. Nursery noticed some of his traits about the same time we did - at 3yo.

Rather than agonising over whether you think he’d get a diagnosis and how similar his behaviour is to other 3yo kids, ask for assessment and let the experts tackle it.

Diagnosis has been crucial for DS. He has an iep, adjustments made that take into account when he’s struggling with being overwhelmed. He struggles with focus, frustration, fear of failure. Writing is particularly difficult, so they put in place dictation software so he can turn in pieces of written work without getting overwhelmed by his handwriting difficulties. In addition, knowing he is autistic is helping him understand himself and why he finds some things in life so difficult.

clockover, fair enough but we only have the one DC and a vague suspicion would be a heck of a chance to shell out nearly 3 grand on!

I would move to get an assessment sooner rather than later. Where I am diagnosis is done via CAMHS for children from their 6 birthday. Children aged 5 and under are diagnosed via the paediatric development team. The paediatric development team has a shorter waiting list than CAMHS (it's also a better service!) - I was lucky and made the referral a couple of months before my sons 6th birthday. It took just under a year from referral to assessment. My son was coping ok in Reception but started to struggle more in Year 1. As demands go up children tend to struggle more and he is more 'obviously' autistic now he is in year2. If you start school without a referral/diagnosis then you need to be assertive and clear with school as to what you suspect. You need to make sure they have your child on their radar and are making reasonable adjustments etc.

@Phineyj

clockover, fair enough but we only have the one DC and a vague suspicion would be a heck of a chance to shell out nearly 3 grand on!

It wasn't a criticism, even if it sounded so.

Thank you, everyone. I appreciate everyone's feedback. As someone with ASD - I am not dismissive of a diagnosis but also trying to navigate how best to go about things for DS. At the moment, there arent any issues at the nursery and he seems fine, loves going there etc. So I am just trying to think ahead and how he would fare in a much bigger and noisier environment. I love the idea of small classes and DS would clearly do much better in a smaller setting but also worry that a competitive London prep would be worse rather than better for him.

As an aside - if he does get an ECPH - does that mean that it might be easier to pick schools or would we have to send him to our nearest school. This is more to do with secondaries rather than primaries

With any child who is starting school where you are worried, I would ask for a meeting with the school before they go.
I work in a school. We appreciate advance warning if a parent has concerns. If a parent is worried we can watch that child with the parents concerns in mind and see what we think.
More importantly, are there particular situations that cause issues? Knowing if a child is likely to be stressed by something is very useful. Any signs that the child gives that they are becoming stressed or unhappy so that staff can look for these and step in and prevent it getting worse. Anything you find that helps - things you might do at home to divert him or calm him down.
It’s useful to know these things before you find yourself in a situation with a very upset child and you have no idea what upset them or what to do with them next!

I’ve also had to do it with my own DD who has had major issues in the past ending in her running out of them classroom in a temper. Turns out she has some SEN. Since diagnosis and the right support, her behaviour has massively improved but she still has anxiety around certain things. I know what signs to look for and have told her teacher, who can now tell when she is becoming stressed and ensure that he intervenes to help her before she reaches breaking point. Much calmer all round.

You can go to any school in the LA that can meet your child’s needs with an EHCP.

@RussianSpy101 nearly - the parent can nominate any school anywhere that can meet the child’s needs, so long as their education there is not “incompatible with the effective education of others or an inefficient use of public funds.”

My DS is autistic and, whilst he was developing in line with other children his age when he was 3, I did have a gut feeling that he might be autistic. I took him to the GP a couple of times, and asked for his school to assess him (when he was about 5) but they all felt that he was working at age related expectations and developing in line with his peers so did not want to pursue a diagnosis. He was really well behaved at school and did not stand out as someone that was struggling. Turns out he was just fantastic at masking.

By the time he was 7, he was experiencing extreme anxiety around school and finding the environment really challenging and he was no longer working at his age related expectations, so his school felt that this was probably due to him being autistic after all! So he was sent for an assessment. It took 3 years from him being referred to receiving a diagnosis. But as soon as school realised that he needed additional support, they put things in place to help him.

I'm telling you this because like you, I had a gut feeling that my son was autistic but it was not until school could see 'the gap widen' between my DS and his peers that he was referred for an autism assessment.

The diagnosis has been a game changer for my DS as he understands himself better and this has had a direct impact on his anxiety reducing so I would say it is definitely worth pursuing. but in my experience, schools don't refer children for assessment unless they have seen evidence for themselves.

I hope that helps.

To those of you who got a diagnosis privately - how long did that take? My 'plan' so to speak was honestly to see how he gets on in the next year or so and if things remain as they are to get him a diagnosis and a plan. I guess my assumption was to get it done privately because clearly waiting for 3 years is ridiculous. But I don't exactly have 3k to throw around every year in case they tell me that he is still too little and it's hard to tell. I just don't think that we could then spend another 3k at 4 - to basically go to another specialist. Well, we can but I'd rather not. Right now he seems fine and has no issues at nursery but I am perhaps cautiously thinking that I may need to put things in place in reception such as getting him a childminder rather than dumping him in an ASC.

I am also not dismissive of ASD - even if yes, I do see it more of a spectrum. Clearly, it's also different from person to person and certain traits are more difficult in a school environment than others e.g. my father is very mild-mannered whereas my mother does have the whole explosive meltdowns thing. I was very good at masking at school - not sure if DS remains the same as he is now that he will be as good as I was. It is different person to person but not every 3 year old who has a meltdown when they are overtired has ASD.

I would also say that a diagnosis should be pursued, as it will support him. My son is working well above age expectations, has an EHCP, was diagnosed at 5 and needs significant support and will likely attend a specialist setting post primary school. There are no givens in this system. Record your evidence, push hard and don’t be afraid to ask for what he needs - you are his best and most passionate advocate.

In terms of pursuing a private assessment, I was advised that my local council did not accept private diagnosis and would only provide support if the assessment was done through the NHS.
Looking back, I wish that I had pushed harder. It would have meant that my DS would have received support sooner.

@fernfriend may I ask why that was? That seems crazy in view of the current backlog?

@gfy678686

To those of you who got a diagnosis - what difference did it make in practice? I was just wondering? I never got a diagnosis at school (actually getting one was pretty hard as I can do fine with most things) - had friends, got top marks and to be honest, not sure what support would have helped. I just found people a bit baffling, couldnt do extended essays or long projects - because they baffled me and i couldnt be creative to come up with an idea and stick to it.

OP this makes me really sad for you. You found people bagging, couldn’t do extended essays? Couldn’t be successfully creative? Imagine what the right support could have unlocked for you!

It feels as though you expect diagnosis to be both impossible and pointless - neither is true.

Please get support for your son, and yourself

It would make more sense to get into the waiting list now for an NHS diagnosis than spending money you can’t afford for a private one surely?

@Moulesvinrouge1 well I am in my 40s so this was 30 years ago. I do not think that things were the same back then. Plus, my family kept moving countries etc so honestly, I am not sure that all of that was to do with ASD. My mother was a great advocate so whenever I couldn't do any of the work - she just went to school and basically made it happen that I didnt have to. It wasnt as bad as all that. But I definitely found long projects very hard to manage and was much better at exams. And even if I found people baffling - I still had friends and stuff.

To those of you who got a diagnosis privately - how long did that take? My 'plan' so to speak was honestly to see how he gets on in the next year or so and if things remain as they are to get him a diagnosis and a plan.

Personal experience of having a child privately assessed wasn't good at all. In the end the NHS diagnosed her. She had been on the NHS list the whole time though.

I guess my assumption was to get it done privately because clearly waiting for 3 years is ridiculous.

Alternatively you can raise your concerns now so he will be on the list already.

But I don't exactly have 3k to throw around every year in case they tell me that he is still too little and it's hard to tell.

That's not how it works. I have mentioned twice the difference between traits/behaviours and the diagnostic criteria which focus on impairment and deficits. These will always be present.

Yeah it seems crazy doesn't it? I think we had been waiting for nearly 2 years so I contacted the school to say I was considering a private assessment for my DS but they said I needed the NHS one. It was a few years ago now though so things might have changed?

Hi! I would just like to ask PP who are disgruntled by the "mild" autism reference - are we still allowed to acknowledge that some people have "severe" autism? You know, the ones that can't care for themselves etc?

This is a genuine question by the way, no hostility intended. Is "severe" autism known as something different now? I'm genuinely curious to learn why the term "mild" autism causes so much offence.

@clockover I am not against an NHS diagnosis. But to be honest, since Covid started - we really haven't been able to see our GP face to face for anything in London. Things like getting ASD referrals for 3-year-olds don't seem to be a priority. I did ask a couple of months ago but nothing is happening. That's why I am asking about private ones - because at the moment, at least where we are things are basically just not happening

@mijustparanoidorjuststoned yes, thats actually how i used it - mild to mean that DS is verbal etc. It was not a disparaging just a bit of a cold - it was as a way to distinguish severe Autism where a child is quite clearly autistic and other cases

[quote gfy678686]@clockover I am not against an NHS diagnosis. But to be honest, since Covid started - we really haven't been able to see our GP face to face for anything in London. Things like getting ASD referrals for 3-year-olds don't seem to be a priority. I did ask a couple of months ago but nothing is happening. That's why I am asking about private ones - because at the moment, at least where we are things are basically just not happening[/quote]
I would say much of this is down to how much you push. Saying ‘I suspect he has some ASD traits what do you think?’ will get a different outcome to going in with evidence listed out clearly against diagnostic criteria and saying ‘what I need from you now is a referral’

@amijustparanoidorjuststoned

Hi! I would just like to ask PP who are disgruntled by the "mild" autism reference - are we still allowed to acknowledge that some people have "severe" autism? You know, the ones that can't care for themselves etc?

This is a genuine question by the way, no hostility intended. Is "severe" autism known as something different now? I'm genuinely curious to learn why the term "mild" autism causes so much offence.

Actually OP said 'a mild form' and I was more offended that they had just self diagnosed their child with something that didn't exist. (OP did acknowledge though so don't really want to raise it from that POV again) That said, autism isn't mild, not even for those who can function. The majority of what people would call severe autism is usually autism accompanied by learning difficulties and/or other NDs. It's a really hard one and I'm no where near capable of articulating what I want to say but I do see there is a point to be made for all autistic people. Peoples opinions of mild/severe are generally not accurate though.

I'm genuinely curious to learn why the term "mild" autism causes so much offence.

I probably am sensitive to it because there is nothing mild about the effects being autistic has had on my life. I'm probably sensitive because there is not much mild about watching my children suffer because of it. I'm probably sensitive because the use of 'mild' minimises our disability, and it's hard enough fighting our way through life without people being dismissive because it's only 'mild'

@clockover I genuinely didnt mean by mild that it wasnt serious. I just meant it's mild as in will have to be diagnosed as opposed to severe where this is as much a physical disability as a learning one and presumably would have been diagnosed earlier. Personally, I found the term Asperger's helpful but I know thats gone.