Could someone please explain the concept of the Autistic Spectrum?

[Niceweather]

Is the Autistic Spectrum something we are all on but we are just at different points along it? Or to be on it, do you need to be diagnosed with certain characteristics?

It was suggested many times, by many people that my son had Aspergers so we eventually went to see a Clinical Psychologist who said that he did not. He ticks many boxes, has many markers and is very eccentric but does not have the difficulties that would tip him over into a dx. My friend who is a teacher is still saying that he is "on the Spectrum".

I found this from Dr John Richer and wonder if you agree with it? "He suggested that there are no rigid barriers which divide the mildly eccentric child from the fully autistic - they are merely at different points on the spectrum."

Thanks

Lol Boch, obviously a grandma sucking eggs scenario!

It must be highly frustrating for you to be in that position. It can be hard enough being taken seriously when you have a concrete Dx.

The second paed we saw with Dd3 had a way of explaining it that i quite liked
She said

Think of most people being on a scale of 1 to 10, 1 being totally opposite to autistic as in able to socialise, imaginative, no issues with communication, not obsessive in any way. Rising towards 10 people would be considered quirky or eccentric or geeky.
People on the autistic spectrum are 11 and above, they are outside the normal range and their difficulties have an impact on their everyday lives.

Dont know if i have put that very well but it helped me to understand a bit more about it.

bochead the problem with getting more and more labels is that ultimately, you still don't receive the help and support.
Was told again today that help I was looking for, which most professionals I have spoken to agree with, was only available to us if we had a dx of ASD. Nothing else cuts it. It is partly a funding issue too no doubt, one of the ways in limiting who has access, rather than giving access based on need

Ineed, I like that. So DS1 would be 7, maybe and DS3 would be 9 or 10. I'm about 5 or 6.

Oh yes, DS2 is 15 or so...

Sorry both sisters have been ill & one needs frankly to be sectioned , Mum's at her wits end & DS is due another developmental assessment tomorrow. This thread is a good topic for a rant.

My personal theory on my DS. Try and stay with me cos I'm a bit stressed so might not explain it too clearly. My Dad was deffo dyspraxic, (inc some of the "social" deficits iyswim), however he was educated in colonial Africa and only came to the UK to attend Oxford. No diagnosis - in those days you just were clumsy with horrific handwriting, & considered eccentric. He had a true photographic memory so not completely NT but smart enough to marry a sensible woman and so his difficulties did not disadvantage him in life. Schooling in Africa was very old fashioned with lots of learning by rote and art as a subject unheard of therefore he never had to be creative to excel iykwim. My Mums side is riddled with arty farty, creative dyslexics. My sister has a very developmental serious neurological condition, not ASD but she's not NT.

On his Dad's side DS has a diagnosed AS Granny (who is a primary teacher so able to give me oodles of advice not available to most Mums), a diagnosed AS father, (graduate engineer) and a diagnosed HFA half brother. However the paternal side were all diagnosed overseas.

Despite that weight of family history and the fact that DS walks, talks and quacks like a duck my PCT has been insanely (imho) resistant to the idea that DS may have AS or ASD. I sat in a meeting last summer where the damn lea EP insisted "he's too intelligent to be on the ASD spectrum" - the senco rolled her eyes too.

When DS was a toddler I would have deffo described DS as one of those "shadows" or ghosts Tony Attwood referred to. Then he started a perfectly ordinary mainstream school and fell apart to such an extent that he regressed. I think that was caused by mental overload.

DS would do brilliantly in a rigid education system like my Dad experienced with no confusing group work, silence apart from the teacher's voice, no sensory overload on the walls and a very structured time table. In today's touchy, feely, caring sharing UK school he's at a massive disadvantage.

Rant away, bochead. There was a thread on primary ed recently about over stimulating classrooms. It's the fashion, unfortunately.

Yes ellen, I forgot to add that
Dd1 is about a 13,
Dd2 is a 1,
Dd3 is a 15+,
Dp is a 5
and I am hovering between an 8 and a 12.

I might be deluding myself with that 5 or 6.

auntevil - left to myself I couldn't give 2 monkeys what the label is, however sadly DS needs ASD trained support, (123 magic et all don't cut it).

I'm well aware that at the next annual review or round of cuts, the fact that DS still doesn't have a full diagnosis means he's likely to be 1st in the firing line to have his support removed. I can't get off the carousel just yet - much as I'd like to. Four years of pointless meetings with the local caring carrots has left me very "meh" about their actual (as opposed to professed) expertise.

It's a very silly political game at this stage is all, and I need to stay in play for my son's sake. I'm very underwhelmed with a system that forces my hand like this & so just play on autopilot nowadays.

I fought HARD for the support that has finally enabled my son to start being a child instead of a nervous wreck and to actually learn summat at school. (I relate to the score of 11 btw Ineedalife).

It's the opinion of the well respected indy ed pysch who saw him that he will probably need an ASD specific placement, either in a unit or SS. Jackie Harland (well respected indy SALT) was also pretty shocked he's not in possession of a proper diagnosis.

There's a very similar lad to mine who lives on my estate that was finally given a full diagnosis at age 21. It's also not uncommon for teens to get a diagnosis round here. Similar obvious family history. Sadly his mother went through very similar nonsense - luckily as a sensory expert she's been a lifesaver at times!

bochead I'm off to fight with our local pct about all of the rubbish that they put us through to get a dx. Quite surprised that they agreed to meet. I used to work with political bluffers all the time - so it should make for an interesting meeting - Paxman style

auntevil - four years of DS's medical notes have been "lost" by my PCT.

My oldest stepson has left the UK for good, as he refuses to start a family in a system as corrupt as ours.

Where's he gone?

Are you looking into one of the schools I visited for Ds?

Romania

Not exactly a vote of faith in the UK is it?

The whole system needs a shake up - its slack and lazy. They waste money in making everyone go through appointment after appointment after wait and see, when they could be spending it on actual therapies that could help.
Part of my 'complaint' that the meeting is about is the chronic waste of money in wasteful appointments - its seemingly the only thing that they respond to _ ££££££££

Romania

Still I've heard that the countries round there just don't have the infrastructure or money to be anything BUT efficient in their attempts at getting as much education and independence into their children with SN ASAP before they drain the limited budget as adults.

ABA is effectively the standard method used, with typical E.European zeal. There's no space in the system for mucking around, drinking tea or the caring carrot parade. They just get on with it. Hard direct graft with the child is the order of the day, not endless "review" meetings that achieve nothing. They are paid to a job and unlike in the UK there's no excuse for not doing it.

Parents do as they are told re therapies (I'm going to show you this months stuff & I expect you to repeat this 2x a day at home) and progress is measured by the tangible e.g kid can tie shoe laces, wash, read to X standard, go shopping etc. It would be a real culture shock for UK parents but the focus really is totally on the child.

Yup you are right professionals are held accountable and measurable outcomes/progress are standard. Kicking the can down the road is seen as totally unacceptable cuturally, and anyone who tried would be sacked fairly -swiftly. If a professional doesn't know summat there's no pretense or waffling, they go away and find out ithout delay from someone who does.

Write from the start by Theodurescu is the writing programme used by ALL romanian children if anyone wants to get a favour for their systemic approach and how it works with NT kids. The ASD programme is like I said ABA by any other name.

It's odd cos the alternative for those parents who cba with their kids are the infamous orphanages where the standard of care is still, even after international scandal - abysmal.

Thank you, this has been a very interesting thread. It's good to hear about those other kids out there who have "autistic traits" shall we say? After seeing the Clinical Psycho, I had kind of put the whole thing to bed and believed that any "traits" could be explained away by other means eg - "a willingness to explore something in depth", rather than an obsession, etc. I bristled when my friend again said that he was on "the spectrum". But what really struck me was reading the recent thread which asked about early symtoms - I recognised: jaundice, not latching on, crying when picked up, spinning things, sensitive to noise, etc. One thing I distinctly remember and thinking was normal at the time was when he was just starting to stand up was that he would suddenly crash to the ground like a log. Then, when he was about one and half, he stunned me when he just came out with a massive, complete paragraph from one of his books. Ten years on and he still makes lots of strange noises, monologues about trains and has dyslexia but it's very clear now that he does not have the triad necessary for a dx. He definitely does not have the stresses and difficulties. There are some very ill-informed teachers and Ed Psychos out there! We were told in Reception that they thought he was autistic, then in Yr 1 and 2 that he had Aspergers and then finally an Ed Psycho in Yr4 who told us that he was "displaying many of the characteristics of Aspergers and there was only one way to find out for sure" - which led us to see the Clinical Psycho who clearly knew his stuff, unlike the aforementioned.