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?

@RussianSpy101

Getting a formal diagnosis with covid is not difficult. Have you tried? You owe it to him to at least try.

Are you kidding? We've been waiting over 2 years just for an appointment with the autism team!

[quote gfy678686]@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.[/quote]

I won't address these comments as I genuinely don't know how but I just wanted to say I wasn't having a go at you I was just responding to another poster who asked about it. I did comment that I didn't want to raise it from that point again.

@gogohm

Generally with high functioning asd which schools can manage there is nothing you specifically need to do, apart from obviously back them up on specific interventions they recommend.

My dd never had a echp because she was top of the class academically, the fact she missed so much school due to anxiety didn't hold much sway with the sen staff. She was mainstream educated from 5 but attended a special needs programme from 2-5.

Whether your son meets the specific criteria for a diagnosis none of us know but school interventions do not require diagnosis anyway.

Whether he gets labelled a naughty child will depend on whether he is . Having autism or other medical issues doesn't mean bad behaviour is excused, I can assure you that my dd knew right from wrong at school, if she was told off it's because she misbehaved

Good for you, my child also ‘knows right from wrong’. However when he is in a melt I didn’t, or close to one, or when school have changed expectations for him for the third or fourth time in a day and he has not been properly supported he may well be rude to a teacher or shout. He is in overload. No his autism is not an ‘excuse’ it is a valid reason - ie a disability that has not been accommodated.

Many children with SEN particularly the comorbidity of ASD / ADHD are labelled ‘naughty’. Your statement? Absolute NOT true for a huge percentage of children with SEN who are not supported in the right ways and then disciplined for behaviour which was due to sensory overload or asking for help.

Thank you. That is very helpful!

I have several relatives who have "mild" ASD, also known as Aspergers back in the day. I also have a relative who, other than a heart condition, is referred to as having severe autism - she has the mental age of a 4 year old and will always need carers. I have questioned before whether she may have other learning difficulties but her parents have never said anything other than autism.

My own brother would describe himself as having "mild" autism. But we are all still learning about autism every day!

Hi OP, we used a charity called Starjumpz. They are in Kent. We are in an adjoining London Borough. We contracted them in June 2020 and they saw us in October (this was a cancellation - the official waiting time was longer). There were many forms to fill in and I got the impression if they'd read those and thought there wasn't enough evidence there then they'd have recommended not proceeding to assessment at that point. We have seen a few therapists since then and they normally do an initial info gathering Zoom call free of charge before anything goes ahead. One interesting side effect of all the forms was my DH noticed he met many criteria for ADHD and ASD himself. Which explained a lot.

No offence taken, clockover. It would be really interesting to go back in time to see what an expert would make of DD aged 3. We just thought we must be the crappest parents in the world.

To those of you who got a diagnosis - what difference did it make in practice? I was just wondering?

The difference the diagnosis made to my son was that he got support, he stayed in (mainstream) school, he fulfilled his academic potential, and he developed his social potential. Without it my son's school couldn't have kept him, or the other children, or staff safe.

And many people might say my son's autism was "mild". As in, a lot of the time no-one would know he has autism, and hebevahes like anyone else in many situations. He originally had an Asperger's diagnosis and it was somewhat borderline, the child psych described him as being "somewhere between eccentric and Asperger's" but gave the diagnosis anyway.

The obvious problem was his reaction to the situations where he couldn't function well. It was the diagnosis that enabled everyone to identify predict and manage those situations, and brought him the right support to learn and to develop.

Home and nursery suited him well, we adapted to him without really noticing and he could cope there, so his problems didn't show. But they showed up with a bang when he started school.

I love the idea of small classes and DS would clearly do much better in a smaller setting

My DS did better in a larger setting. True, a larger busier class contained more triggers and DS needed support and adaptations to cope (such as a separate desk, his peg at the end of the row etc) but on the other hand the larger class could absorb him better and the bigger school had more experience and better more flexible resources.

My heart sinks a bit when parents of children with ASCs assume that a small school will be better. Small schools can fail to cope and and badly let down children with ASCs especially if it presents as challenging behaviour.

I did try to seek a referral via a telephone conversation with the GP (DD hasn't seen them in person since pre pandemic) but with the child themselves listening it didn't go well (I have now had a builder put a door lock on the home office so DH and I can at least do phone calls) and then the referral he made was bounced back by the assessing service as closed due to Covid. At least the private place was willing to talk to us. We were at our wits' end and experiencing daily violent behaviour.

I did feel the school took us much more seriously post diagnosis. It's hard to gloss over problems when you're looking at a giant report from a paediatrician. Plus one bonus was the SALT assessment showed DD was a year ahead of age related expectations on that, which was evidence that she was underachieving academically, as she could only just read and write at that stage.

@Phineyj did the school accept the assessment you did privately or did you have to wait until the NHS one. I actually hadnt realised that schools/councils might not accept a private diagnosis. Might get in touch with my local council to see what their policy is, especially since Covid.

Why "mild" is seen as offensive by many people with autism/autistic people, (some prefer one term to another)

neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

"My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile.
“That means I am less functional than 99% of people. Does that seem mild to you?” I asked her.
But, you see, I can speak, and I can look people in the eyes, so they see my autism as “mild.” My autism affects those around me mildly but my autism does affect me severely "

@BlankTimes I appreciate that but a someone with ASD I also have to be mindful that it's not the same as for my mate who has a non-verbal child with ASD. For her - if I say that DS or myself have ASD, she finds that difficult to take. I am not sure what term is best - I found Aspergers an ok distinction - currently, I am a bit torn.

Well for now you can say anything more than you suspect your DS has autism.

But on the whole I think when diagnosed just autism is fine. Trying to differentiate just doesn’t work because it’s such a broad spectrum.

Yes they did - they are a private school though and we're not asking for anything additional (other than some understanding of homework and some sensory issues) - we pay for the one to one sessions with the SENCO and DD can keep up with the class (although I'm not convinced this will remain the case up to year 6 and we are making a plan B in case all the admissions test practice is off putting for her or she does fall behind). She does have some musical talent so we're encouraging that as the school is strong in that area.

But if everyone gets so stuck in semantics - then hoenstly people who are asking for help/advice will stop reaching out for fear that they'll get shut down. The point here was to ask for any support/tips that parents have used when their kids started school. I get that having a diagnosis if appropriate is a good idea. But it would also be good to know what else people did. For example, did you have to reconsider what sort of after-school childcare you used, what you did on the weekends to give your kids a bit of a break, how did you get them to get mentally ready for school.....etc.....etc...etc

[quote gfy678686]@BlankTimes I appreciate that but a someone with ASD I also have to be mindful that it's not the same as for my mate who has a non-verbal child with ASD. For her - if I say that DS or myself have ASD, she finds that difficult to take. I am not sure what term is best - I found Aspergers an ok distinction - currently, I am a bit torn.[/quote]
It is lovely that you are sympathetic to your friend - however if diagnosed your child ‘has’ autism or is autistic just as much as hers - it just presents differently.

@gfy678686

But if everyone gets so stuck in semantics - then hoenstly people who are asking for help/advice will stop reaching out for fear that they'll get shut down. The point here was to ask for any support/tips that parents have used when their kids started school. I get that having a diagnosis if appropriate is a good idea. But it would also be good to know what else people did. For example, did you have to reconsider what sort of after-school childcare you used, what you did on the weekends to give your kids a bit of a break, how did you get them to get mentally ready for school.....etc.....etc...etc

We got rid of out of school expectations - no after school club etc, no play dates. My son needed that time to recharge. PECS. Now and next. Visual schedules for everything. Calm down and sensory activities. Lots of peer parental support.

I'm sorry OP but this is a misinformed post. As you've been told by others you can't have mild autism.

My son was diagnosed autistic at 2 years and 3 months. It's not difficult to diagnose in young children it's a comprehensive multi disciplinary process.

You should seek a formal assessment so the school can support his behaviours and help to minimise stress and anxiety.

@Moulesvinrouge1 interesting to hear. Thank you. At the moment, i know that i've been trying to push for playdates and lots of socializing - we or rather I have then had to deal with the aftermath.

The sad thing is that DS really wants to play with other kids and be with other kids. But he's an only. Partly because of our age, partly because having a kid like him seems to have overwhelmed us, partly cos am also ADS and it just seems like way too much to do between having a job and a kid. Either way - am sad about that. In a way, I wonder whether it would be easier if he didn't care about socializing quite so much. Am the same though. But it does all get too much.

I have to say - it's not only tricky having a kid whom you suspect to have ASD but also tricky when you yourself have it. It's like the worst combination of all

@doadeer thank you and I appreciate that. But I was also curious about how best to support a kid around the whole thing of starting school. Not only what happens in school but also out of school. How did people adjust their lives the rest of the time?

If you have money constraints I would wait on the NHS list for diagnosis (get on sooner rather than later) and save money for private reports like Ed Psych, SALT and OT. If you want support at school these are more important. You can get them via the EHCP needs assessment but they may not be as well specified as a private report (make sure you get a professional who does tribunal level reports). An EHCP is needs led so an official diagnosis isn't necessary. Our diagnostic reports aren't all that helpful in terms of specifying support at school. A diagnosis may be needed for some specialist schools but it doesn't sound like you are considering that. A good Ed Psych report will be more useful to get support at school. If your child is 'on the pathway' school should keep that in mind anyway.

Unfortunately, High Functioning Autism/Syndrome Formerly Known as Asperger’s runs in families. Often, close relatives of a person with autism have soft signs, but have learned to adapt, mask, and manage more or less.
I’m 51, and was not diagnosed until 40. I have relatives born c.1914-1935 who would would have been diagnosed if they were children today. My late father had many autistic traits, but was a very successful businessman. I know people in their sixties who are definitely on the spectrum.

If the nursery is less concerned, give your son some time. 3 is still very young.

@Ericaequites it definitely does in my family.......both sides by the sounds of it. It does mean that things are also difficult with DS's grandparents and we have to manage deal with DMs explosive behaviour and my father's total emotional blindness. It's hard.

I have 2 children with ASD, both normal-high level intelligence, would probably be classed as Aspergers 10 years ago. Neither school will entertain an EHCP because educationally they are meeting and/or exceeding national expectations.

@JoshLymanIsHotterThanSam

It is not for schools to make decisions about EHCPs, that is for the LA to decide. If either of your children are struggling in other ways (eg problems with social skills, communication, sensory issues, anxiety) as PP said you can apply for an EHC Needs assessment yourself.

Information here:
www.ipsea.org.uk/ehc-needs-assessments

[quote gfy678686]@doadeer thank you and I appreciate that. But I was also curious about how best to support a kid around the whole thing of starting school. Not only what happens in school but also out of school. How did people adjust their lives the rest of the time?[/quote]
Sorry my son is young so not at this stage but I am in London and had a private assessment so I can answer this.

It was all very quick, 3 weeks in total. But my local authority insisted on doing their own assessment too which as ridiculous so he had an NHS one 4 months later. Not sure where the £3k figure is from but it costs us less than half that.

We say a paediatrician, he referred us to a child psychologist and she did the assessment. It was 2 hours on phone answering questions and a 2 hour face to face observation and play session. Then she wrote a formal report.