What does it mean to be 'on the spectrum'?

[mrsbaffled]

...is there a formal definition?

Why I ask is because something the doctor said to me last week has confused me.

We went through the process of seeing if DS1 has AS and the final appt was a few months ago. He scored highly in one area if the triad and fell a tiny margin under the diagnostic criteria in the other two areas. We were told he has 'some autistic features, but not fulfilling criteria for formal dx of Autistic Spectrum Disorder'. Ok, so in my head that sounds like he is not on the spectrum, I.e no ASD.

However, a few days ago we saw the GP as we needed a referral for his tics (highly likely he has TS like his little brother). The doc said he 'is on the autistic spectrum'. So I said 'except he isn't'......I think he thinks he is on the spectrum, but doesn't have a particular sort of autism.

So....I am confused. Is he or isn't he 'on the spectrum'?!

Well 'officially' to be 'on the spectrum' you would need a dx, I guess. Maybe what your GP means is many behaviours associated with ASD? (as your ds doesn't quite meet the dx criteria)

However 'the spectrum' is a very broad spectrum and I suspect many might be 'on the spectrum' without actually having a dx, particularly on the 'milder' end. My ds for example has a general dx of ASD, some days he is 'typically' ASD and displays many behaviours, other days he seems pretty 'normal'

I also suspect the diagnostic criteria from area to area varies, depending on who you see.

Well, technically 'on the spectrum' means that a person has fulfilled the diagnostic criteria for ASD.

Generally if someone has narrowly missed the diagnostic threshold they are described as having 'autistic traits'.

'On the spectrum' imo is a very ambiguous term with no concrete definition.

Even when you have a dx there seems to be some confusion as to 'where someone is', as if that can give a prognosis of some kind.

I reality I think that a)It is much more complex than that and b)no-one has come up with a satisfactory or conclusive answer that all can agree with.

Your child is who they are. 'Labels' are helpful as a tool for shared meaning, but will have to be adapted for the audience. If saying your child is 'on the spectrum' helps the GP understand him better in order to refer to the right services then imo, it doesn't matter whether in someone elses opinion he isn't on the spectrum at all.

I don't even know what to say to other people. So far I have said 'borderline Aspergers', 'sort of on the spectrum' and 'not Aspergers' depending on who I am talking to. 'Autistic features' means nothing to most people....perhaps I am better of saying 'traits'.

It is the same with his SpLD (writing, spelling, fine motor). No one knows what that is, so I just say 'dyslexic' even though it isn't technically correct, but people understand what I mean.

My ds has a dx of ASD, but mostly I tell people if I need to that he has 'social communication difficulties'.

Social Imagination. No one knows what that is either :/

Ds went to CAHMS aged 8. School insisted he be referred. He was tested and declared just under the cut off for Asperger's, as he had three friends at primary, and no serious motor skills issues (they said). School not best pleased. Fast forward a year aged 9, we refer him back to CAHMS, and they say he now fulfils the criteria because he has no friends and he is getting into fights in the playground! OT said the first time she saw him (ie: when he walked into the room and spoke to her) she thought he did have typical HFA/Asperger's, but because on the diagnostic score he was only a 6 (I think) rather than a 7 and made eye contact with adults, and was observed to play with others in the playground on the day she returned to visit the school he did not merit a diagnosis. However, they said in a year he probably would merit one, and in the meantime the small print said for the school to manage his behaviour consistent with managing autistic traits. So that was helpful I suppose.... I went away pleased he wasn't autistic, but a year later of course he was!!! and of course had been the year before...and the year before that.

I just tell you this story to illustrate the vagaries of diagnosis. I suppose it doesn't really matter as the schools and parents should really respond to the difficulties sensitively whether they are a result of a diagnosed or near diagnosed problem or not.

Mrs Baffled 'social imagination' Again I am sure this is also a 'spectrum' and affects children more severely or more subtly. I always thought ds had a good imagination, he can pretend a pen is a sword or joke I have a spider on my head, when I don't for example. However given the choice, ds would play alone, lining things up.

During his assessment dx for example ds ignored the therapists attempts to join his play ie he regularly commented about being good at Lego. (had he asked ds directly 'can I play', ds would probably have said yes).

When the therapist withdrew from asking him questions, ds sat silently, never initiating any engagement with him. He comments throughout the assessment, ds followed his own agenda, inspecting and ordering lego pieces. He did not develop his play into any meaningful or creative sequences.

He also comments that when mum joined him, she was very adept at extending his play and developing imaginative sequences. Ds happily went along with her ideas, but did not generate any of his own.

I think ds's difficulties are very subtly, and someone not very experienced with ASD, would probably have missed this. I remember a SALT telling me that a child with ASD simply wouldn't let me join in with his play.

The word 'spectrum' has a lot to answer for as do the various other arbitrary ideas in relation to ASD, among them 'has friends' 'makes eye contact' 'plays imaginitively'. Same goes for the cut offs of 6 or 7 or whatever. dd2 scored a paltry 3 on her recent ADOS (a test whose limitations are under-recognized) yet was recently diagnosed with ASD. Her Paed felt that the developmental history reports and observations from private and NHS specialist SALTs and input from school and me were much more informative to the diagnosis than the ADOS. dd2's dx took 4 years to reach in the end. It was frustrating (understatement) but the end justified the means.

mrsbaffled I think your GP has used the term 'spectrum' to say 'a little bit autistic'. I also think you were left high-and-dry with your 'autistic traits' diagnosis. That blog posted upthread really explains the spectrum so much better, perhaps show it to your GP.

Well for what’s worth the clinical psych said about my DS “he’s somewhere between eccentric and Asperger’s. Let’s call it Asperger’s, I like to be creative in my diagnoses”. There is a limit to how objective and concrete any ASC diagnosis can be, especially on the borders, because it’s all based on observation and judgment. My DS has no gross motor skill problems at all and had several good friends throughout primary school. He was also violent and unpredictable – except that if we looked on him as Aspie then we could understand and even predict what would set him off, and we could find educational and environmental strategies and therapies that helped him (and us). So from a practical point of view the Asperger’s diagnosis he got when he was 6 made perfect sense.

Some diagnosticians are box-checkers and insist on ticking a given number of boxes before they’ll hang any diagnosis on anyone. Others are more practical, and ask “would this child benefit greatly from having this diagnosis”. If I was doing scientific research on autism I’d want the first, but as a parent, the second matters more to me!

Our (not) dx was given using the 3di questionnaire, so 100% box ticking. It was based on my observations, after another paed observed him in school and thought there was enough evidence to proceed.
Unfortunately the school's responses to the questionnaire were unhelpful ('no problem') which, I believe, dragged us just under the threshold food dx of HFA/AS (despite what the other paed saw).

I get the feeling the paed also thought that we, as parents, are dealing with things fairly well, and because he copes 'ok' at school there is no point giving him a dx. Goodness knows where he would be if he was born into another family who doesn't understand him so well, and who hasn't taught him loads of coping strategies to enable him to function socially (so lots of boxes weren't ticked which might otherwise have been).

I've recently had similar with DS age 6. He has hypermobility, tics, auditory processing difficulties, social anxiety which can present like selective mutism, fine motor skill issues, anxiety over many things, phonological speech delay/disorder and highly likel to be dyslexic.

The CDC discharged him because of his age (they only go up to age 5 and he's nearly 7) after nearly 2 years stating "unable to reach a unifying diagnosis"! I have a dd age 14 dx AS last year. What are the chances of him having all these difficulties and it not being ASC?

He finds school really difficult but fortunately has many friends (although the party invites seen to have stopped) but he has taught himself how to make friends as he observes behaviour and sees patterns in many things and he told me his method! How this will translate when he's older a d they can't just run around playing tig etc who knows!

He's fine with the kids it's the teachers he has difficulty speaking to and he is very compliant so not an issue for school, who have tried to cover up many of his difficulties.

I'm now trying to decide on where we go from here, if anywhere.

Mrsbaffled, schools and their lack of understanding and knowledge of ASD have a lot to answer for.

The questionnaire school filled out 'no problems' in all areas. Luckily for us, ds had already undergone SALT, Dietician, eye specialist and OT assessment, so by ticking 'no problems' in all areas, when experts had already identified he had 'problems' said more about school, than it did ds. It was interesting to note, that despite ticking 'no problems', when the class teacher was spoken to she actually said she had concerns with things like handwriting and ds did have difficulty interacting etc, etc. I assume school had difficulties putting 1+ 1 together! or I wonder who actually filled out the questionnaire!

Ds received his dx from a specialist ASD SALT, well it was a child development centre and paed and EP was part of the team, however it was SALT who did the assessment/observations AND the team actually communicated!

Ds's dx was based on formal assessments using tests for things such as 'social understanding' ie ds was shown pictures and asked what he thought was happening and what he would do etc. 'inferential comprehension' ie read a story, with a picture to refer to, then asked questions to see if he understood the situation. His verbal comprehension, expressive language, receptive language etc was also formally assessed and an observation in the classroom.

Observations 2 x hour long sessions in clinic observing him, taking note of his social interaction with therapist, his play etc, with the 'team' observing too.

A 2 hour interview with me when history was taken.

They also gathered information from other expert reports, school etc.

Had it been CAMHS who assessed ds, I doubt he would had got a dx. From my experience, they don't read expert reports and base everything on here and now and listen to school a hell of a lot. When ds did start seeing CAMHS (after dx) they actually said to me what makes you think he has ASD! (based on what school had told them)

Absolutely right, all of it.

The 'spectrum' has been turned from 'a range of presentations which all fulfill the criteria but may seem quite different to the onlooker' to 'a range from least severe to most severe'

zzzzz, you're spot on with the 'but you're managing him amazingly well, there is no need to go for a diagnosis/provide a 1:1/give him a suitable placement/fund anything/make any accomodations'.

I haven't had too much of that but a friend of mine has and she's to the point of exhaustion with 'managing it well'. She thought pulling out all the stops, sacrificing her life and her family, giving up her career was a TEMPORARY ARRANGEMENT until the support kicked in.

Didn't we all..........

In the states they use the phrase pervasive developmental disorder not other wise specified for children who fulfill some but not all of the diagnostic criteriA

Seen as most of the criteria is centred around communication I do wonder why specialist SALT's are not used more and/or included in dxing.

Psychologists and Psychiatrists are not experts in this field.

All experts seem to wash their hands of you, once you have your 'label'!

That has been my experience of 'experts' building up to dx, you are referred off in this and that direction. Then there is enough info for 'expert' to make a well informed decision, then 'label', then 'see ya'!

I wish I had a pound for every time I heard the phrase 'its common in children with ASD' like that is a get of jail free card, oh its ASD behaviour, its to be expected, go away and deal with it, its your problem now!