Autism...?

[Hawkmoon269]

It's very important that I start by saying that I'm not trying to upset anyone or cause any offence. Please don't read anything into my question that's not there!

But aibu to not understand why so many people on mn seem to have children who are autistic or on the autistic spectrum?

I have 2 (young) children. One is at a large state primary school. Neither have any friends or classmates who are autistic. None of our family friends are. None of my dc's friend's siblings are. We go to lots of groups (all inclusive things ) and no autistic children (or siblings that I know of). In my student days I nannied for a boy with aspergers. That's it - my sum total of people I know/ have met with children affected.

I've met lots of children with other sn, but it feels like on mn every other poster has a child on the autistic spectrum.

As I understand it, the definition isn't too clear with very high functioning autism (ie people "on the scale" but only just. That was my understanding from about 10 years ago - I'm sure research has moved on since then!

Anyway, not trying to be controversial - just genuinely curious. What do you think?

Unchartered

A diagnosis does not lead to a "cure" but hopefully will lead to the provision of some support.

Parents push for a diagnosis so they can access treatments and support for their child as in a statement of educational needs. This allows their child to have a classroom teaching assistant helping their child access the carriculum. Also speech and language therapy.

Autism is very much an invisible disability. That 'naughty' child you see in the supermarket may be autistic. You are not aware of this and frown at the mum who clearly has no idea how to 'discipline' her child or control him! Hence parents of autistic children are peed off with society's attitude to them and their children which makes them hypersensitive to implied criticism. On top of this they do an astounding job caring and advocating for their LOs with no appreciation from society and sometimes, sadly, continued problems with their child.

I have met 2 or 3 children with ASD but only because DGS has cerebral palsy, and tbh I really couldn't see anything different, but speaking to the parents learned about the obsessive door opening and the huge tantrums so, no it is not easy to spot in a group of children.

RubyFakeNails

The thing a diagnosis can do for an adult is help them understand things in their life that may previously have not made sense.
If you understand your condition and can recognise the ways in which your perception of situations is different from mainstream, that can be useful.

Depression, indeed suicide is too big a problem amongst people with asd. Not understanding why the world is filled with rules and signals that you just don't understand must be isolating in the extreme.

Also being able to say 'i find this situation challenging because of my asd is way easier than trying to just expect others to get that you are struggling.

Surely most of us would want to u derstand anything that affects our life and relationships?

That's my guess anyway

Ok so its an actual doctor who has to diagnose. Thats interesting, I had been under the impression it was typically something to do with SS or the school.

How does diagnosis work with high functioning people though? I'd assume, possibly wrongly, that in order to even be considered for a diagnosis someone, either a parent, carer, teacher whoever must identify that something is wrong. But I've read that some people with HFA can barely be identified as autistic, I think it was said up the thread that it is a fine line for some on the spectrum so I guess i just wonder where that push comes from?

Its an interesting but quite confusing topic for me. The only time I've had any experience in relation to the 'system' and DD2 and SN was absolutely horrific. Its also put me off asking questions to more 'official' people because I don't like the experience I had in the past.

Also thanks for answering my questions I guess it does make more sense and seems a bit obvious. I suppose when you have no contact it seems very complicated.

I do mention my children's autism on threads where nobody is talking about autism. It's because I want to contribute my pov but I am aware that since I don't have any NT children, my parenting is different and my experience is different. So if we are discussing something about, I dunno, discipline, and the OP is asking for advice, I may give advice, but qualify it by saying that my children have autism, so it's really a different world with a different set of rules.

I don't think anyone goes on a thread and says yes, that dress is nice, I have a child with autism

Of course it needs to be a medical professional... It a recognised condition, it's not parents/teachers/nursery diagnosing.

I think the DM has a lot to answer for wih regards to the confusion over statements and asd.

If you believed the DM, you'd think you could get a diagnosis on the back of a cornflake packet!

I don't read the DM only the sidebar of shame

The reason I had believed it was through the school is (backstory):

Last year after the riots, I was in a complete and utter flap about living in London specifically Hackney, and as a result of my tantrum DH suggested we move out to Wanstead (more suburban for those who don't know) where his Dsisters and lots of the dcs cousins live. We rented a house while we tried to find a new one and I kept the elder 2 dcs in their schools as they are both in GCSE years and can commute alone etc. However I moved DD2 (5 at the time) to a new primary school, mainly as she had over 8 cousins there and it was the start of the new school year.

Anyway quite early on we were called in and it was suggested we get DD2 tested for ASD. Dh and I weren't happy with this as she had just moved schools, she tends to be more introverted at school and in new situations and we knew that once she warmed up she would be the bubbly child she normally is. But no they kept pushing and pushing (over the space of 3-4 months), meetings with the head and some behavioural person. Eventually SS was mentioned, now i have an abject fear of SS and that was it for me. DH was ready to take her to stay with his parents in Jamaica and I was not only furious but quite stressed particularly as I had a lot of things going on with my business and the house at the time.

In the end we approached her old school which she had enjoyed, well for the 1 year that she was there, and as both my older children has been there I was familiar with the senior staff. We got her back into her old school and moved back to our current house. The entire thing was a complete nightmare and as I think you can tell the process was never explained to us, it was always implied she would somehow be tested through the school.

My DS got his dx through the GP and CAMHS at 9. Because up til then no one had put all the pieces together including me.
So OP, high functioning children and adults can escape your notice if their weirdness matches the weirdness of their families. Or if they can PFN in the world and hold it all in until they are in a safe place. Or if none of the triggers are tripped whilst they are in your company. Or they have developed coping strategies that are effective.
There are very few general parenting sites that also have an SN section, Raising Kids used to have a very active one that I used, but Disney bought it and then shut it down, so I ended up here.
I post in a lot of places, not just the SN boards, but the latter is where I feel at home.

The first step to diagnosis is Statutory Assessment. This can be done from either the GP or school/nursery.

Basically, it should lead to observations and tests from a team of experts to establish what causes the child to behave as they do.

This should lead to them working with parents and teachers to identify strategies and therapies that can be used to support the child. This is then formalised in a legal document called a Statement of Educational Needs.

In an ideal world

Ok so yes I guess thats why I was under the impression the school do the tests.

It did take months just for a dx PP, and being on a forum with other people helped hugely with putting all the bits together.
Like the food and the sensory issues and the needing to organise certain things in a certain way and the not coping with oboes.

DS1 was diagnosed long before he had a statement.

I raised concerns with the HV when he was just under 2 having been concerned for 7 months).

She referred us to a specialist autism SALT who told us he 'definitely' wasn't autistic and arranged to review in 3 months.

Despite me phoning and asking to be seen we weren't seen for another 8 months by which time it was clear something was wrong.

We saw a private verbal dyspraxia consultant who was horrified we had been told ds1 wasn't autistic.

The waiting list for the complex communication disorder team was 2 years.

Luckily we were moving areas. So the consultant referred us to the paediatrician at the new area. Specialist HV visited and referred us for multi-disciplinary assessment. So just after 3 dxed with 'ASD'. A few years later revised to severe autism and severe learning disabilities.

I applied for statutory assessment prior to ds1 starting school eighteen months later.

He sees/has seen paediatrician, neurologist, geneticist, SALT, clinical psychologist. I treat his paediatrician as his GP in a way. So for example I wanted something relatively minor to be checked recently so arranged to meet her when she was in school, far easier than trying to get him to the GP's surgery.

He also has a care plan from social services, although he is frequently without a social worker (which is crap imo- his care needs are very high and he will need lifelong 24 hour support).

Very few of dd1 school mums know she has autism.
I think maybe 1 parent at dd2 nursery knows she also have autism.
The only reason we know so many parents with children with autism is because of the support groups we access.

Purple, that isn't true here. You only ever get dx from a developmental pead or CAMHs and SA is like gold dust

Ruby, it's more likely that school will notice for lots of reasons: parents accept and love their child unconditionally, they will also probably have gradually adapted to accommodate their dc without noticing; school classrooms are full of sounds, smells and textures that a person with ASD may not be able to tolerate; the child's "quirks" may only be noticeable in relation to their peers; an experienced teacher will have more knowledge of "normal" than a parent, particularly if the child is dc1; staff may have met other people on the spectrum and recognise signs.

Fallen, months is pretty good going for HFA and AS several permanent exclusions and a couple of tribunals seems to be standard for teens I've known.

Lisa, that was the simplified version to help the newbies. Hence my face at the end

We had exclusions and all sorts of crap to wade through at primary, secondary was much better.
But then I'm an experienced teacher with a copy of the SENCOP and a very focused attitude. Which made me a tough prospect for educationalists in the fights.
We also opted out of a lot of the standard stuff that would have brought us to the attention of parents like Hawkmoon. So he would just have looked intense and clever and aloof. Like his dad.

But are children ever just quirky? Tbh I'm stick absolutely fucking raging about this thing with my DD2 (only ended about 6 months ago).

My whole family is quirky and very able, which is why we didn't spot that DS had AS for so long. he fitted in fine at home.
It was the real world and school that were problematic and triggered violence and meltdowns in him.