Will ASD child always be this full on?

[Shrimpshapednuggets]

Those with autistic children - how likely is it that my 4 year old will always be this full on? He needs constant supervision (no danger awareness) can be absolutely lovely but has such a temper when things don’t go as he expects them or wants them to, I struggle with how he will sing or shout phrases at the top of his voice and people stare at us, not because I care what their opinion is but because it kills me to see the way they look at him and it sends me into this rabbit hole of if people can be that judgemental of a 4 year old how will they treat him as he gets older?
He sometimes likes other kids, sometimes likes being alone doing his own thing. I worry about him making friends, as in will he actually have any? He has never been invited to a birthday party and I worry that if he ever is, he won’t have a clue what to do and it will be a disaster and he won’t get invited to another one.
I cry at least twice a day, with worry and sadness.
does it get easier? Thanks if you read this x

Following. As in very similar situation with DS(8) x

YANBU to be stressed and worried.

And YES it gets so so much easier. My ASD/ADHD kid was a nightmare at 4, 5, 6. Something evolved around 7 and at 8 he is now just adorable and lovely.

Do all the therapy you can get your hands on. OT, SLT, all of it. Individually you may not see a difference but collectively over a long period it all helps.

feel free to DM me x

My daughter is the same, she's 4 she's been invited to 2 birthday parties from
nursery. Took her to both, she didn't interact with any other kids and did her own thing. I don't know the answers as she's only the same age, but as he sounds much like my daughter what kind of school is going to in September?

I was worried about friends and bullying to be quite honest but she's going to a specialist unit of 6 other kids so I feel a lot more chilled about that now

Also try and find other SEN families in your area. They understand and then parties etc sort themselves out.

my son in special school now but at mainstream the other kids openly despised him so i know how it feels

DS is 11, atm things are better than they've been for a long time.

Key things that helped were -

More appropriate school provision which includes lots of help with wellbeing and managing his emotions

A group he attended that was also designed to help children with regulation etc.

Melatonin prescription

DS getting older

Us learning when to keep things extremely low demand and when to ask small things of him.

I don't know what the teen years will bring I'm just grateful things are calmer right now.

Thanks for your replies. He is starting at a mainstream primary in September, he has an EHCP recommending very high level
of supervision. I’m really worried about him making friends 😢
I’ve been taking him to visit his classroom and teacher weekly to try and get him used to the new setting. Each time he is so hyperactive and runs from corner to corner of the room. He is going to start on a reduced timetable initially.
I have this vision of him playing alone with a TA for company or trying to join in and the others all getting annoyed with him and then him having a meltdown because he’s upset.

Gets loads easier. By age 6 I'd say a different person was emerging. Now 12, absolute worlds away. Although full of energy it is filtered into football and cycling.

Early years were a blur and incredibly stressful. I cried all the time. I had to leave playgroups, I felt I had no friends, I couldn't find any new mum friends who wanted to be with us. It was just me and my son. I don't know how I survived.

I'm going to pm you OP

@Pantaloons99 This is me now! Crying all the time, stressed all the time, always had to leave the toddler classes because he would be kicking off, nursery some days are ok some days they call me to get him because he’s too much like hard work for them, as mentioned sometimes he joins in with the other kids but it sounds like most of time he’s off doing his own thing. I just hate the idea of him always being alone and nobody wanting to play with him and what that could make him feel as he gets older 😢

@Shrimpshapednuggets my son has lots of friends now. It has taken time because new people often think what the heck is going on here 😆 He's really funny and witty as so many ND kids are!

Also, I feel that this social side of things often upsets parents way more than the kids! My son had issues here but I was the one struggling and suffering. He wasn't that bothered and now finds his way on his own. Every time I tried too hard to get involved I made things worse! Kids are really forgiving and alot more tolerant than the parents, especially now with so much awareness. I can spot lots of ' different ' kids now and often they get drawn to each other and make connections.

This is a difficult age. It will get better and he will find his people. This is just a tougher journey than the rest.

I can't recall if you said he's diagnosed. That helped alot. School weren't great here so I couldn't get enough people to support an assessment on NHS. Had to pay sadly.

@Shrimpshapednuggets absolutely check out the Nemechek protocol, it’s been very beneficial for my little boy - I thought the meltdowns would never end at 4, at 5 it’s soooo much better. That and a very inclusive school and quite collaborative parenting rather than authoritarian has helped a lot.

Don't allow school to keep him part time for too long - he's entitled to a full time education and if they can't meet his needs then he needs to be somewhere that can. Don't let school phone you and ask you to pick him up without formally excluding him. This is convenient for them but is illegal, exclusions need to be properly documented.

https://www.ipsea.org.uk/pages/category/exclusion-from-school

@Pantaloons99 yep he has a diagnosis.
he can be like two different people, sometimes he is so jolly and will greet other children, will want to join in. Other times he goes mad over the slightest thing. There’s literally one little girl that actually comes over to say hello to him and he often blanks her (when I’m standing there willing him to speak to her and make a friend 😂🫣)

I don’t know whether to say anything to the parents of the kids in his class when he starts school or not. On one hand I don’t have a clue what these people are like so don’t want him to be potentially labelled/defined by his diagnosis but on the other hand would it be helpful if they knew so if he’s acting a bit unusually they know why rather than assuming he is naughty etc?

@Sue152 thanks for your message. I’m hopeful that the reduced timetable will be a brief intervention just to settle him in gently rather than throw him in full time straight away, I definitely don’t want him to miss any school but I think it’s probably best for him to start off gently, I guess we will see 😬
He doesn’t start primary school until September, it’s his nursery that have kept sending him home recently xx

This was also our experience. The years from 2-6 were just awful on every level. But as he gets older and also understands that he is autistic, it is getting better. Hang in there OP. Try audio books as a good regulator, especially the Ladybird Audio Adventures. We started there and are now on to Percy Jackson. DS eats it up and great educationally and for reading, listening mug skills

@Shrimpshapednuggets this can and probably will get alot better. I watched my son do all sorts that was ' odd' but he has watched and learnt. At first he was very disliked I felt in a new primary school. Also he'd get one playdate invite then never a second. He wasn't diagnosed then but it was obvious.
Once diagnosed, I encouraged my son to be open and tell everyone. I don't know whether you can just make them aware so they can tell everyone in their own time once they understand it. My son now arranges to see lots of friends - they decide now instead of the parents dominating it. I assure you, the parents will be the biggest issue until he's old enough that they don't interfere.

I thought my son would be beating me up now based on meltdowns I tried managing in early years. He's nothing like that. The potential to rage is there and always will be but it's manageable.

I'm not sure ref telling other parents. I'd personally wait until there are invites to things and then tell parents one on one. There will be judgement and exclusion to some extent regardless if you tell them. You won't be the only one. There are clearly about 4 ND kids in my son's class.

@Xsnsnshsjs @mybeesarealive thanks for your messages, he has definitely made progress since he was younger (play used to be lining things up on repeat, whereas now he is actually using his imagination but he is still so delayed in things like turn taking because he is so, so impulsive and just grabs things and can be quite disruptive which annoys the other kids. He can be the most loving little boy, but he can also become very disruptive and angry when disregulated and it’s hard for me to deal with in my exhausted,
emotional state so his classmates are probably just going to steer clear.
I don’t know what to do to help him 🥺

OP when he starts school, insist on the SENCO involving every possible agency to help him integrate, and to build towards an ehcp. My DS has one now that pays for a one to one TA. If was life changing and ended a cycle of pet time timetables and sadly exclusions.

Just wanted to be another expressingly solidarity OP. We have 2/3 children with ASD including our very gentle withdrawn daughter and a four year old boy who is bright, completely demand avoidant and struggles with behaviour and anything social.

We were very lucky to meet other parents with autistic children and to learn about a little village school a few miles from us when the number on roll was falling and a number of families from across our area were travelling to the school for their expertise with high needs kids. Our son is in a small class now and with kids who are going through similar things. The parents network is lovely and understanding and we don't have that feeling of difference any more.

A good school will make a huge difference on the things that are worrying you, and if you don't find that school at first try it is worth having at the back of your mind that it is somewhere.

Re: telling people diagnosis.

we didn’t first and they just thought he was naughty and rude. Actively pulled their kids away from him. Made comments to us about boundaries etc.

I started leading with proactively telling people his diagnosis. Everywhere we go now, on public transport, whatever. I would say 99% of the time people are understanding, parents explain to their kids. I had other school parents recommend books for their kids to understand autism (my friend simon is good btw). A very few are horrible but i’d rather a few horrible than the vast majority think my kid’s just a badly raised brat.

@mybeesarealive He has an EHCP 😃 xx

Also @Shrimpshapednuggets if you search my name I had a thread where I asked parents of ASD children who had turned out lovely what they thought they did right and it has been very very useful for me. If you can find it and bookmark it might be useful xx

YANBU - it was horrendous for many years but it does get easier. You're coming from a good starting-point as your ds has a 'strong' EHCP to enter primary/infants/reception with.

You must watch the implementation of his EHCP like a hawk and be aware that things can go horribly wrong, even though you're advised it's all 'fine'.

Do not be afraid of exclusions (insist on permanent ones), nor baulk from considering the Independent Special School sector. After 1 permanent exclusion, 1 withdrawal and the 2nd permanent exclusion (at my insistence via the Governors) by the age of 10, it was a done deal - the LEA had to fund the Special School and it worked for DS.

It was heartbreaking all along the way and I could hardly believe it was happening or what to do; I learned on the 'job' so to speak. My biggest recommendation is that 'withdrawal' is not the best idea and should only be done as a last resort'

DS22 is a fine young man now, one of the calmest people and soon to start a fantastic apprenticeship opportunity. Any tears I might shed now are from relief that it all turned out well in the end.

But I'll never forget that little 'Tasmanian Devil' that had so many adults running for cover.

@Xsnsnshsjs This is how I’m leaning as well. I have seen looks, none of the other parents greet us etc. I’m guessing they just think he’s badly behaved and don’t want their children to play with him 🥺

Same as other pp have said - toddler years were a nightmare, gradually got better and at about 8yo something shifted. The meltdowns are nowhere near as often or as explosive. We have been up front about his diagnoses - also has adhd - my feeling is that people will judge the behaviour so they might as well at least know where it comes from. That way if they’re still being judgy then I know who to avoid! I’ve also made some good friendships with parents of children with similar difficulties (solidarity!).

he's 10 now, and doing much better at parties since he generally knows what to expect. He doesn’t get many invites to friends houses, but they do meet us out and about, or they come to ours. All their parents comment on how polite and lovely he is. His teacher did a lesson on neurodiversity and afterwards his friends kept coming over asking if he was ok and did he need anything which I thought was really sweet! He was just confused by that though 😂