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

A diagnosis of an ASD requires there to be functional difficulties with the triad of impairments:social communication, social interaction and social imagination.

It is not about eccentricities but about developmental difficulties with these key areas.

Yes, I totally agree and understand. Would you need these difficulties and a diagnosis to put you on "The Spectrum" or is the spectrum a continuum with everyone lying at different points along it? I think I read in Tony Attwood's book about a "grey area".

No. I don't agree with that. I am not on the spectrum. Not anywhere on it.

Nor is my daughter. She is whatever the opposite of asd is. Not all in a good way. She is very perceptive and emotionally manipulative. Tbh I kind of worry about her.

You can however be diagnose with 'traits' but this is fairly meaningless now and will become more so with the new dx criteria.

You need a diagnosis to put you on the spectrum. We are not 'all on there somewhere'.

The spectrum refers to the fact that people with autism share the same type of difficulties/deficits but have a wide range of abilities, language skills etc.

Lorna Wing came up with the idea of a spectrum. If you google her and look at her stuff you will see how the term is used clinically.

You cannot have an autistic spectrum disorder if you have no functional deficits in the key triad areas.

You are not on the autism spectrum if you are not capable of diagnosis.

I find the 'all on the spectrum' thing more of a sop to parents going through the dx process and usually spouted by ignorants in the run up to a referral and prof dx.

My DS has a diagnosis of "social communication disorder with Autistic Traits" as opposed to a full diagnosis of Autism. It took 3 years while the education system failed him totally to get an ADOS appointment to get that much. He's been taught ABA style to make eye contact so didn't fulfill the criteria for a full diagnosis.

Being in the "grey area" has made it much harder to access support for a child that very obviously needs it. He'd had a permanent exclusion and had burned his way through 3 primaries & a behavioral unit by 6. He spent 3 years constantly in flight or fight mode (anxiety, & fear cos he didn't understand the world around him) before a Tribunal forced the LEA to convert his meaningless statement into one worthy of the paper it was written on.

I'll quote my LEA's chief sen officer's words at tribunal in response to my request that ASD outreach help him "It's unprecedented to give that kind of help to a child without a full diagnosis".

Day to day we treat him as if he has a full diagnosis (eg Teacch used at school, together with sign language, ABA behavioral management techniques, sensory diet home & school). He describes himself as autistic as he relates to others he's met on the spectrum better than the NT - his teachers & I follow suit.

Nobody would ever describe DS as NT however - not after spending an hour with him. It's a mystery as to why he doesn't have a full diagnosis but them's the facts as they stand.

I dont think we are all on the spectrum somewhere... no more than we are all asthmatic just because eventually with enough exercise we would get out of breath.

There is however a wide spectrum from Mild to sever etc and there are those who dispaly some traits but dont fit the current diagnostic criterea for a full diagnosis.
There are also "things" that make us all uncomfortable & anxious for some this may be certain social situations, for other certain sensory input, i dont think this means we are "on the spectrum" I think its just the tings we dont like.

The "we are all on spectrum" is a very unhelpful comment banded about by professionals and belittles what is for many a very disabling condition.

Yes I hate the 'we are all on the spectrum somewhere' 'we all have our own little idiocincristies [sp]'

Usually spouted by people trying to downplay difficulties or belittle your experience!

You either are...or you arent, its like saying 'im a little bit pregnant'

Sorry I totally F'd up that spelling of the idio thingy

StarshitTerrorise what is the new diagnosis criteria? Am intrigued

Google DSM 5, Hellenbach. I'll try to find a link later.

I think I'm guilty of using the term 'somewhere on the spectrum' to describe my DS3 who hasn't and is unlikely to get a DX of ASD. He's very quirky and is more like my friend's DS with Aspergers than he's like a NT child.

I do tend to think of 'the spectrum' as being wider than those who could get an ASD DX, as I tend to include those with ASD traits, those with Dyspraxia whose issues include social deficits etc. Maybe it's lazy and inaccurate but I do get what your teacher friend is saying.

My DS1 is geeky but I think of him as on the geeky side of NT. I think of DS3 as on the very, very high functioning side of autistic. DS2 is HF autistic, but obviously autistic, nowhere near a DX of Aspergers. Just my take on it.

Here's a link to the proposed new diagnostic criteria for ASD in DSM 5. www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

This is the only bit my son doesn't fulfil, however I'd insert a few dyspraxic traits here instead. It's nice to see the sensory issues included though asI think these are often the most disabling part of DS's quirks.

I like that analogy. We're all on the pregnancy spectrum somewhere.......and we can have pregnancy 'traits' I e nausea, heartburn, swollen ankles, stomach cramps etc.

Bochead, my DS kind of doesn't fulfil those either.

In truth he DOES, very much so, but only if you know what you are looking for. DS has a million things that he is narrowly obsessed with and they are extremely varied. However, his wide ranging narrow interests are still not comparable to my dd's level of flexible thinking which makes her thought processes much more unique, adaptable and able to move all over the place.

I think if I didn't have her for a direct comparison I might winder if DS had any rigidity at all. Also, his receptive language, due to ABA, is excellent and explaining things in advance and often at the time gets us through most transitions.

The excessive adherence to routines is the only bit that DS2 doesn't meet. He's pretty flexible really. I suppose the 'Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change' isn't particularly bad either.

He meets all of the other criteria especially the hypo sensitivity and motor stereotypies. Oh, and all of the social deficits!

Star - trust me if you met DS you wouldn't be discussing his "traits", you'd be saying he was HFA same as his teachers.

He may "present with all the behaviors associated with a full diagnosis" but - There were other issues which prevented DS getting a full diagnosis - chief among which is my appalling parenting, also he suffered a developmental regression at 4+ For a proper diagnosis - regression should be prior to 36 months.

It'll be interesting to see how many diagnoses are altered to one like my son's and how many like my son suddenly qualify as "autistic" under the new criteria once implemented.

Oh DS has obsessions and very rigid thinking. It's the "trait" his fantastic class teacher finds hardest to manage nowadays. He's had to be literally dragged away from the odd science project that has grabbed his attention.

You can manage the rigidity - there's an art to it though iykwim.

He's still bitterly complaining to all the neighbours etc about the fact I replaced our toilet seat two weeks ago - it's embarrassing . I can't wear lipstick or change my hairstyle. I can't redecorate our run down flat. Melt downs come if we don't put the pizza toppings on in the right order & I am so sick of Pokemon and Dr Who, you wouldn't believe it.

ABA style coaching taught DS to make eye contact, which has really helped him. It's learned artificial behavior though, not natural instinct and eye contact wanes when he is tired, same as his Dad's. His receptive language is abysmal but being in a school that signs has really helped.

So from the dsm5, do I understand that if there is one part of ABC or D that your DC doesn't have, then rather than being 'on the spectrum' you would then have to have each area that you do have as a separate dx?
My DN has 'autistic traits' but my SIL has never pursued any help/proper dx, but he realistically meets all the criteria, but 'traits' just seem a lazy fob off to parents that don't understand the implications of a blurred dx

Not having a proper diagnosis means they can shove a kid who can't cope in mainstream without appropriate support in a PRU and forget about them. Trouble is they won't cope in a PRU either so an educational career can be over before the child has finished Key Stage 1 if the parents aren't vigilant.

I'm now fighting for those "traits" to be properly defined this time with the latest school's support as this isn't summat DS will outgrow, he's wired differently to the norm iykwim.

I look at the neurological deficits like interlinking olympic rings sometimes they add up to adhd, sometimes asd or sometimes they combine and you end up like poor coff3pot with an alphabet soup of labels after being fobbed off for years. The labels themselves are only important in that they are used as a gateway to accessing support. That's this parents understanding of the implications auntevil.

From Tony Attwood's book, A Guide for Parents and Professionals (page 145)

What is the difference between a syndrome and the normal range of abilities and personality?

The normal range of abilities and behaviour in childhood is quite extensive. Many children have a shy personality, are not great conversationalists, have unusual hobbies and are a little clumsy. Indeed, some can become quite abnormally shy. However, with Aspergers's Syndrome the characteristics are qualitatively different. They are beyond the normal range and have a distinct pattern. It is recognised that the condition is on a seemless continuum that dissolves into the extreme end of the normal range. Inevitably, some children will be in a "grey area" where there is some doubt as to whether their unusual personality and range of abilities have the distinctive quality and degree for a diagnosis using current criteria. These children have a "ghosting" or "shadow" of the condition. Nevertheless, the strategies developed for children with Asperger's Syndrome can be modified for such children, who usually benefit from the same programmes. It is noticeable that their rate of progress on such programmes is markedly accelerated.

I see it as that many people will have characteristics, behavioural traits, or difficulties which are also seen in people with autism, but will not present these in a certain combination (the triad) or significantly enough to warrant an actual diagnosis.

Then there are people who have a smaller number of these characteristics (eg obsessive behaviour, or a retreat into repetitive behaviour, to take just two examples), but none of the other characteristics. And in other ways, eg social interaction, might be completely non-autistic.

And then the people who have a tiny numberof 'autistic-like' charateristics or none at all.

To warrant a diagnosis, in some standardised tests (eg ADOS) you have to fulfil a number of the criterea - say it's a points system of 100, and to be classified as ASD you have to get 50. Someone could 'score' 45 and so display many of the characteristics but will not get a dx of ASD.

My ds now would quite possibly not get a diagnosis of ASD as he is only very, very mildly affected with the typical symptoms ( eg communication/imagination) - but some of the autistic-like difficulties/traits he has are very clear and can be quite severely restricting to his life (eg obsessive topics of conversation).

I reckon that in a few years time there will be much more refined definitions rather than a catch-all 'ASD' diagnosis.

Obv I have nothing whatsoever to back this theory up