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?

Yes, it's a shame that the topic is politicised. We accidentally did some stuff right including: starting very early with school research & picking a school where she could go from pre prep straight into reception (but this was because of shortage of primary places locally & not to do with SEN), maintaining friendships with nursery friends, cutting back on anything extra curricular, using informal afterschool care (we did hire one nanny from an agency but also paid neighbours and the adult son of a friend at times). I went part time and then what helped most overall was joining the local Facebook group for DD's main condition (found it via the website of a national charity) - loads of leads and advice on there and other parents who got it and didn't judge. I also got some great advice from the SENCO at my own school (I'm a teacher). DD laughs in the face of laminated checklists and so on. She's pretty convinced the rest of the world should change, not her (DH is rather similar).

I expect ours cost more as it was an ADHD assessment as well. In fact ADHD is the main presenting problem currently, but the ASD is coming into play more as she gets older.

@BelleOfTheProvince

I think most people use mild to indicate what used to be classified as high functioning Asperger's. There's a world of difference between that and someone who needs to attend a specialist school for example. Surely the fact it's a scale means it will be more manageable for some than others.

@BelleOfTheProvince stop with all the outdated stereotypes.

My son is gifted and what you would probably call high functioning Aspergers (doesn't exist as a diagnosis) and he attends a specialist school. There's no continuum or scale. There's is no mild, moderate or severe. Every person is different with a different set of characteristics. Please read up on what you don't know before spouting this to people who are even less aware.

[quote gfy678686]@clockover I appreciate that and I have done research on it so using the term 'mild' as a form of shorthand to communicate it to other people. I am also only 'diagnosing' it on the back of the fact that I have it, as does my mother, father, brother, uncle and grandparents. With Covid plus his age - gettting a formal diagnosis is difficult but I wanted to hear from other people's experiences.[/quote]
You are hearing it from other people's experiences, they're asking you not to call it mild asd and you can't self diagnosed your own child. It's offensive to parents on here that go through the stressful process of a diagnosis.

I hate these threads, they are so damaging

[quote gfy678686]@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]
Call it autism. And don't self diagnosis

I think things like removing all pressures at home and having clear transitions can help.

Clear morning routines are a must. Leave plenty of time so things don’t end up a stressed rush. I always get dressed early on so I am able to focus on him and not need to sneak away to get dressed or anything.

After school we always have some sensory time to help transition,

Oh! Thought of another one. If your child likes a particular uniform item (seamless socks are popular here and those "skins" that go under PE kit) get a bunch of them. DD really struggles with PE trainers and school shoes so I sometimes get the "barefoot" styles.

@BelleOfTheProvince

I think most people use mild to indicate what used to be classified as high functioning Asperger's. There's a world of difference between that and someone who needs to attend a specialist school for example. Surely the fact it's a scale means it will be more manageable for some than others.

There really isn’t. Some autistics may go ‘undetected’ in their lives, and struggle unnecessarily. Many ‘high functioning’ children attend specialist schools or cannot cope with school at all. This is a hugely outdated and harmful stereotype. It is not a scale!!!

Using the word mild puts higher expectations on those children not in a special school and 'look fine' so when they can't cope with societies expectations of them to fit in, people don't understand why. Because it's only 'mild'.
It's a spectrum, every child is unique and different in their own way.

Stop using that term, stop saying it and stop writing it. Makes parent's jobs so much harder

Would anyone else have any other experience of things that have worked before or after school ans in the weekend once DC start school?

What works for us is to have clear and consistent morning routines. Now and next helps -“now eat breakfast, then brush teeth” kind of thing. DS likes a visual calendar, so each week I do one on the whiteboard I have in the kitchen, with each day and a word/image to signify what’s happening. Also helps stop the constant “how many days until the weekend?” since he can see for himself!
Get everything ready the night before -packed lunches ready, uniforms laid out, bags packed, to cut out rushing around in the morning. The first few weeks of the school year are always worst for him - new classroom/teacher/students (since they keep mixing up the two classes in his year 🙄). We keep evenings and weekends low demand and led by him. No after school club, and weekends if we’re out one day we stay home and chill the other. He needs the time to recharge.

Would anyone else have any other experience of things that have worked before or after school ans in the weekend once DC start school?

It depends on how anxious the child is and what their particular triggers are. You have to structure things around that, really. Calm the anxiety and life is a lot easier.

How do transitions affect them? What type of journey to and from school is it, short walk, long walk, car, school bus? All have their own highs and lows and sensory input depending on how your child is on leaving home and school.

Children don't stay static with things that can put them outside their comfort zone. As they grow, some things that were major obstacles
for them become commonplace and other things can then emerge that need to be overcome. You just have to identify their difficulties and do what you can to make their lives easier. If you find something that works, stick with it, no matter how odd it may seem to parents of NT kids. Find what works for your child.

Generally, after a major transition, it's good to let the child relax and settle, alone if necessary, with quiet or sounds of their choosing.
We made a comfy sensory space for that. Often on coming home from school, parents want to know how their day's been, what they had for lunch, what they learned, who they played with etc. and the poor child is already at exploding point with masking all day so one question can tip them over the edge into meltdown.

Observe your child, trial and error what they need to feel comfortable in different situations. It's worth the effort

Yes, DS definitely has sensory overload when he comes home from the nursery. What is a sensory space? Maybe we need one of those

We have a box of different sensory toys and he has sensory lights and the likes in his bedroom. It’s a space where he can go just to chill.

We also often go out into the garden with a tube of bubbles to chill

I have no experience with ASD so I will not comment but I do have a lot of experience with SEN law. It is a myth that a private diagnosis is not accepted. Yes it is often a policy LAs have but policy does not trump the law. Ever.
We were told the same bs by our LA. Haringey if you're by any chance in it. Once we got to tribunal appealing the ehcp, the private assessment and the foreign assessments (we were told it was 'illegal' to accept foreign assessments by out LA even though it was from a EU country when UK was in the EU) were the main pieces of evidence used. It is a lot of crappy scaremongering.
We had absolutely awful experiences being assessed by NHS teams but I hear the pediatric autism teams are really lovely. Can't say the same for camhs.
If you can afford the private assessment do go for it. If the waiting list is roughly a year for an NHS one, then do that. They are just as good and it sounds like you may have that year.

@Nevermindthesquirrels ah interesting to hear about Haringey. We were actually thinking of moving into the borough. Having tried to get in touch with them regarding schools etc, they really haven't been very forthcoming.

My advice from a child who went from coping so well we didn't clock his behaviour as autistic to massive meltdowns in reception, leading to referral and diagnosis...

• express your thoughts to school and develop a plan together to aid settling in. He doesn't need a diagnosis or EHCP to do this. It could include things like a visual timetable, setting up and showing him a quiet zone to chill in, working on zones of regulation with him and rest of class, using ear defenders if noisy, meeting with the SALT, play therapy...
• also ask them to observe and record any observations. We got a quick diagnosis as school were supportive
• hollow laugh at EHCP for what they would have called Aspergers. You get declined for the application form here and have to appeal just to get a form to fill in. The school repeatedly told us there wasn't a cats chance in hell and that they could meet his needs within their existing budget. Then they excluded him so often he was almost expelled. Go figure.

Oh allowing to take in and use fidget toys or a comfort toy, coloured cards or emoji cards to express their feelings or ask for time out. Mine struggled most with free play so they may need more careful observing and support to learn the skills around this

"not that difficult to get a diagnosis" what the fuck? I've raised ASD query with professional s for my daughter since 3 years of age. She is 13 and after the recent overdose she took finally we were asked to complete a initial survey and have been referred. Schools and doctors don't just do referrals and honestly, they don't care. You will have to push.

@gfy678686 the admissions team aren't very nice because all the schools are insanely oversubscribed. They're just be really not very nice lol. I'm guessing you looked at the west of the borough. The state Sen provision in those 'naice' areas is absolutely dire. Don't touch them with a barge pole. Norfolk House is a lovely school for someone like your DS. Classes of about 10-15 and really nice Sen support. Our friends DS is just finishing y6 there and has ADHD with lots of social issues. They've been super happy with it and the fees are very reasonable.

@Nevermindthesquirrels interesting to hear that. I was wondering whether any of the 'lovely' schools would work for DS. Not sure whether we are just too late for private on top of the fees - most have ridiculous waiting lists and assessments. Are there any state options in the West of the borough that are any good with SEN.

I have a 3 year old similar to yours. I also have a year 6 child who was diagnosed with HFA at the end of year 3. I had always worried he had autism. His last three years at primary have been so happy due to the difference in the way the school have engaged with him. For this reason, I would suggest getting the ball rolling, even if you're not sure. My older child found the transition from nursery to reception v difficult(especially the noisy, crowded playground, where he would hide). I feel sad I could have avoided some of his distress by having acted sooner, despite nursery( and all our families) saying they didn't have concerns.
The GP has referred my 3 year old, and even if he has not been diagnosed, I am glad he will start school, with them being aware of the concerns I have(which this time are shared by nursery). Good luck.

Why do people get upset with the term mild .there used to be a term called asperger. That was def a mild form of add in my brain. And asd is a scale ... so why wouldn't there be a mild form? Also there is plenty of people taking about severe asd but then there is no one complaining....

Anyway. Op. Get your child diagnosed first. For his sake. And your own.

Because words like mild minimise the impact it has on the individual, it gives the impression to society that it isn’t really an issue for them. It does morning to help anyone and just feeds prejudice and stereotypes.

@gfy678686 having worked in some of them, I can't say they are. A lot of them have been dragged through legal cases by disgruntled parents of SEN kids. They are all very oversubscribed so your DS will without a doubt be in a class of 30. Most with pushy parents that have 'gentle' tutors from reception creating a very high standard in class that's difficult to keep up with if you don't provide any tutors yourself.
I doubt you're too late for Norfolk House. They're usually a backup for people who aim for Highgate or the others and they usually have some places in September for reception.
Mill Hill pre-prep is another gentle alternative.
If your DS enters the state system with an EHCP in place, he would have the best chance. I know he is young and it may seem daunting, but it is a very sad place for SEN children in this education system. Even if he doesn't have ASD, the list of difficulties you've given will mean he will likely really find it quite hard at school with 30 kids.
For sensory destressing I can highly recommend a little tent in his room with some fairy lights and a lava lamp of some sorts.