ASD: what if your child meets 2/3 of the diagnosis Triad? Grateful for info.

[Grey24]

I've been finding the SN thread a brilliant help during this year, as my DD had speech & lang delay, and subsequently been going through assessment for ASD - largely thanks to MNs info, which pushed me in the right direction to get her help. I'd be grateful if anyone could share their experience of having done assessment/diagnosis where their DC met 2/3 of the Triad, but not all 3/3 (hope that makes sense, not sure how to phrase it).
What happens then? Does that mean no diagnosis at all? Is there something else you can be diagnosed with ('communication disorder'? or does that not really exist?) Does it mean 'atypical autism'? Do you get left in limbo with no help at school etc?
To explain the background, my DD (2.3) clearly meets the first two criteria (eg she has never done pointing/sharing, doesn't use gesture, her eye-contact used to be very limited, though it's improving, she has speech delay etc, and doesn't do much pretend play, etc). But, we're not sure that she has the inflexibility/rigid routines aspect. She's certainly difficult to look after & wants to do things her own way (but that may just be typical toddler or might just be her personality as she's always been like that); she was obsessed with books from 8 months old until recently, but is starting to find other things interesting (like climbing....).
Sorry for the long post, I wish I could be more concise. We have a 'multi agency' meeting approaching & I'd like to know what to expect if she isn't 'classic ASD'. Any advice or info would be much appreciated. Apologies if I've used the wrong terms.

Sorry, I had never seen a toddler with asd.

I absolutely agree with maryellen.

I personally (& have lots of profs who agree with me) don't think ds fits the ASD criteria ... but so what? He certainly isn't nt & far greater harm would be done to him from failure to intervene than from getting a possibly incorrect diagnosis.

For most people (not all certainly) diagnosis does help with interventions - we access very little in the way of statutory services. We electively home educate, we fund our own ABA programme, we've declined CAMHS & autism support intervention BUT the dx (ill fitting as it is) has still been useful too us.

You know your own child, so only you will be able to tell really. I think that in dd case where its so ambigious we would rather have a wait and see approach. In her statement she is getting support to meet her specific needs at school which is what we want. We don't want a snap dx at this stage, and then later down the line dd changes and is stuck with the dx. As she has developmental delay and was dx with that, a lot of her difficulties are part of the delay and not necessarily Autism.

In my experience, I had the same sort of thing as dd, developmental delay, and social communication problems that would have presented as ASD, but then it was not dx. Now I am so much different to the child I was and would have hated to be dx so early. I did not used to like phones as a child and scream when they rang and refused to be near them, now I can hardly stay off them, and love phoning my friends. My speech and language was delayed as a child, now I can talk for toffee without any intervention. I was not very sociable and preferred my own company, and to play on my own, now I enjoy the company of friends and love to go out and about with them. I caught up with my delay in time and I started to improve so much, that I went to UNi did a BA than a MSc which is what would never have been thought of when I was little.

The paed said that what dd has is most likely to be genetic, I had a delay, my dad and my had delay, has did my half brothers so due to this we would rather wait and see.

meant my dad and mum had developmental delay, as did my half brothers.

Thats right justabout dd has a formal dx of dev delay after a multidisciplinary meeting involving, paed, SALT and Ed psych. They were unable to dx ASD, as a result would rather wait and see which we are happy about. I would rather all professionals being absoultely sure of ASD or any SN than dx with uncertaintly as justabout has highlighted it could be other SN which shows up as the child gets older.

Ds assessments started just before 3. He was dx as PDD-NOS, but now its HFA. He did not fit the last criteria. But since starting school he does. I think at 3 life is still geared around them and play, and dinners, bed etc are pretty routine. But as school starts and his life gets busier with all the different aspects he has definitely increased his rigidity, as a need to control. His also started becoming a clock watcher, I'm not allowed in his room till 7am, and his not even 6!

Also ds never really seem to stim, but these days it's pretty constant, and his speech so v.v. repetitive. But can be surprising quick and funny, well..

Wow! Thought my thread had ended - and suddenly here are lots of new responses - thank you all so much - enormously appreciated by me & DH. Am actually going to print out so I can really take in fully what everyone has said. But thank you so much for sharing & for your thoughts & perspectives.

You've made us feel less alone in our state of 'not-sureness', awaiting this multi-disciplinary meeting (about which we haven't exactly been briefed - I rely on MNet so much at the moment for such essentials...!). You've answered lots of our questions - thank you all!

My son is 6 and has been under CAMHS for 1 year and the paed for 3. They have just told me that he displays "autistic tendencies" but not enough for a diagnosis. He is pleading with me every day to miss school and usually has to be dragged out of the car. He (and others mentioned above) just seem to fall through the cracks in the system. If my son doesn't get some help or support soon we will both be cracking up. Any advice?

ASD is currently diagnosed by observation of behavioral traits Identification and Evaluation of Children With Autism Spectrum Disorders with possible changes in DSM 5 due to be published in 2013 Clinical research: Autism categories are not clear-cut. So it may be worthwhile looking at the underlying causes of these behavioral traits Sensory Processing in Autism: A Review of Neurophysiologic Findings and some of the more recent ASD research papers some of which are included in this CiteULike Group: Autism - library (244 articles) collection

All of the info here is REALLY interesting to read.

My DS is 3.10 and also meets 2/3 triads. The one he really doesn't meet is the social criteria. This is SUCH a tricky one because in some ways he does have social defecits (notably, inappropriate responses/behaviours) but he is far too "sociable" for a diagnosis (apparently). He didn't score highly enough on his ADOS for even a PDD-NOS dx but I didn't feel that this assessment was comprehensive enough to give a real idea of all his difficulties.

The other problem is that, on a good day, he can come across as completely "normal" and interacts extremely well. The only thing that "gives him away" is his flapping and jumping.

He also has hypermobility and low muscle tone which has prompetd me to ask the consultant for an array CGH to be carried out (genetic testing). My suspicion is that he may have a duplication of his chromosome 15 which may also account for the mild nature of his problems depending on where the duplication ocurrs and how big it might be. Of course the tests may well (and probably will) come back clear - in which case I've no idea what other avenue we might explore! Try Googling IDIC 15 and see if any of it might ring true...

There's such a major overlap between so many conditions which are deemed to be on the Spectrum, it all gets very confusing. My stance is that I won't be happy until we get a diagnosis of some sort as I feel it will lend valididty to his difficulties and enable him to access the help and understanding he'll need throughout his school life. The way I see it is that, even though it's mild, I don't see how a child can have so many difficulties over such a broad range and it be deemed that there's nothing "wrong" with them just because they don't fit into a (seemingly) rather arbitrary triad...

Sorry for rambling - helps to get my thoughts down too!

Yes, that's what I found interesting in this thread... however, alot of his symptoms seem to get better as he gets older. The symptoms that haven't improved stick out more than ever though... so confusing.

He's recently started to actually play with other children when in a group environment which is fantastic. However, when he's having a bad day I can't play with him in any way like I can with his twin brother (for example playing cars, he will just smash them up and isn't interested in the "story" we're creating). So some things are improving while others aren't.

We're very lucky though in that his Specialist is truly fantastic and we've always had access to help and services (actually part of why I think he's made such good progress)...

My ASD sons social problems have definitely become much more apparent as hes got older, hes 7 in 3 weeks

outthere

"I don't see how a child can have so many difficulties over such a broad range and it be deemed that there's nothing "wrong" with them just because they don't fit into a (seemingly) rather arbitrary triad..."

The triad of issues are specific to ASD, but that does not mean that there not issues or problem areas. if you go back to Sensory Processing in Autism: A Review of Neurophysiologic Findings there are a wide range of issues which have to combine or co-exist for the observations required for an ASD diagnosis.

However those who do not have the so called worst case scenario for an ASD diagnosis, they can still have any of these individual issues, or less complex combinations or severity of the issues listed. The real problem could be that the professionals carrying out the assessments are only looking for behavior issues and are not qualified to assess or even diagnose the possible underlying neurological issues which can cause the triad of traits. We are no longer in the 1980s when everything was defined in terms of behavior, neurology and genetics and helping to explain the reasons how and why these problems exist, which requires a different approach to assessment and diagnosis.

Auditory Sensory Processing - requires an audiologist
Tactile Sensory Processing - not sure which profession would assess this I am sure someone on MN will know
Visual Sensory Processing - requires an optometrist
Attention Impacts Every Stage of Sensory Processing - attention issues require a psychiatrist ............................

So the make up of any multi-discipline assessment team will have to vary according to the nature of the issues required to be assessed, and the qualifications of the professionals required to provide any such assessment and diagnosis.

dolfrog - Thanks for that link (I see you posted it earlier too) it looks like really interesting reading - I'll have a proper look at it tomorrow.

Reading back on my post I hope I haven't given the wrong impression. I didn't mean to imply that the triad was arbitrary, just that maybe the criteria for ASD (as opposed to classic Autism) as an umberella term was fairly unhelpful ime.

It sometimes feels like the specialists are saying that if my DS made less eye contact then he'd be classed as Autistic. The fact that he makes good eye contact means he has nothing to diagnose. This massive disparity is what feels arbitrary to me... I think my main concern (although I haven't read that article yet) is that these issues you mention don't carry a formal diagnosis (or have I got that wrong?). They are exactly as described: a collection of issues which I worry teachers and other carers are going to think are in my head...

I guess it goes back to the whole issue of a so called mild disability being a double edged sword. I feel as though I'm constantly treading a thin line of being pushy enough to get DS the help he needs and worrying that I'm coming across as neurotic and precious!

That's the reason, that despite myself, I actually hope the Array CGH shows something. This in turn makes me feel incredibly guilty... If it comes back clear I really don't know what we're going to do... maybe revisit the diagnostic criteria for Dyspraxia and/or Sensory Processing Disorder...?

BTW - I know that eye contact doesn't make up a whole triad... was just simplifying to make the point!

dolfrog Can I ask, do you think that the only valid assessment for ASD is a multidiscipline assessment? Is this what I should be pushing for? I've always trusted our Specialist because he has a special interest in Autism and has been really amazing with the support he's offered (honestly, I could kiss the guy - he really listens). Do you think the ADOS assessment is flawed?

I do think the ADOS assessment is flawed.

But the whole damn system is flawed. Go for the dx that will help your ds get the support he needs. Dx are not for life. They can be updated and removed. They can also limit expectations so do beware.

outthere

ASD is still only diagnosable using behavior observations, and the ADOS system is recognised as one of the best assessment procedures.
Research into the neurological causes of ASD have been hindered by the invasive nature of the technologies available and the highly sensitive nature of ASD itself.

The neuroscience technologies have been evolving and improving over recent years, which has included the understanding of issues which can combine to cause ASD. And together with genetic research eventually there will be clinical diagnostic process, what is being suggested to be spectrum of disorders.

Human communication tends to be mainly based on Visual and Auditory stimuli or information processing. (two of the sensory issues) And research has already been done regarding the various visual processing disorders, and auditory processing disorders; although research still has a long way to go. A further complication are the attention related issues, which combined with the auditory and visual processing issues can really complicate breaking down observed conditions such ASD or even dyslexia.

The professionals can only work with what peer reviewed Research has established at the current time, and as research technology and the resulting understanding of the issues advances, so will the understanding of peer reviewed opinion.
As you may be aware I have Auditory Processing Disorder (APD), I have been discussing APD with some of the leading international researchers for about 10 years now. What they will say and discuss privately, can be very different from what they are prepared to say publically. They will only discuss issues in public for which they have 100% research based support. And then there is me who lives with APD 24/7 who has a better understanding of what APD is then even they will discuss privately. The APD researchers have to find methods of explaining the problems I experience everyday, and identifying the neurobiology the causes the problems. And ASD is very much more complex than APD.

So as StarlightMcKenzie says you have to go with waht you can get and waht is best for you and your DS, and be aware that the understanding of these issues is always improving, and sometimes we parents have to find the research to educate the so called professionals. (who do not like finding out, or accepting that a patient, or patients parent knows more about an issue than they do)

LeonieDelt

not wanting to be picky, but a Multi discipline assessment requires multiple professionals, each expert in their own disciplines, and a developmental pead is only a single professional who is not qualified in diagnose in the various disciplines. So I would question the validity of that sort of diagnosis.
The real problem is that all of these assessment for ASD are subjective and open to the personal interpretation of the individual carrying out the assessment, and each of the procedures focuses on slightly different issues which can cause the traits which are described as being ASD, not very scientific, but that will only come about when there are genetic and neurological assessments. So it is not so much that any single procedure is flawed more that there is no scientifically defined objective measures of what ASD is, and how it should be diagnosed at the different stages of human development.