Cont (2) autism diagnosis and descriptions

[OneFrenchEgg]

Continued from previous thread

I don’t think MS or SS is a good definitive indicator of need. It forms part of the bigger picture to inform needs, but on its own isn’t a good indicator. There are many DC in MS, for many reasons, who have more significant needs and require more support than some (not all!) in SS.

Unless you think everyone with EOTAS has more significant needs than those in MS or SS? Because, using your theory, anyone in MS or SS is managing in school, those with EOTAS can’t.

Perhaps in a world with enough special school places that is so. I honestly think people would be surprised at the severity of some children in mainstream and the level of support in place, particulary up to 7.

The only reason Ds is in a mainstream school is because it is the only school in the area that could come close to meeting his needs. The specialist provisions would have been even worse for him (although fantastic for some)

if this placement fails then EOTAS will be the only viable option

Sirzy sounds like DS3. He is in MS but has a huge amount of support and therapies (more than some in SS), and he has a personalised timetable.

I don’t think MS or SS is a good definitive indicator of need. It forms part of the bigger picture to inform needs, but on its own isn’t a good indicator. I would agree with this, it’s a bit like late diagnosis in middle/old age is an indicator that someone isn’t as impacted (because they’ve flown under the radar for so long) BUT there are those that are seriously impacted and have flown under the radar because they were thought to “just” have LD or because their life was so supportive it was less obvious what the difference was.

@PearCrumbleCustard I really do think we need another word for less severe autism - or autism which does not have any significant developmental issues. Whether it’s Asperger’s or another term I think we need it as everything - research, support, articles, media is centred on the functioning more adult or later ‘diagnosed’. Centred being the word.

I completely agree. My DS is stereotypical Aspergers, when I use the term Autism or Autistic I get one of two responses:

• The assumption he must be far more unable and severe than he is. This leads to people attributing traits and struggles to him which he doesn't have.
• The belief that he can't possibly be autistic because he doesn't present in the stereotypical or 'severe' way, whatsoever.

It's problematic for everyone...

MS is an option for most disabled children unless they impact others education massively or can’t be kept safe. I would suggest that not all severely autistic children can be accommodated in MS and those that really can’t are in ss or out of education and to me ARE severe.

I would suggest that not all severely autistic children can be accommodated in MS and those that really can’t are in ss or out of education and to me ARE severe.

Many of the DC that fit this sentence would, under the old system, have been described as having high functioning autism or Asperger Syndrome. I’m not saying they can’t have severe autism as it depends on the definition of severe autism, but I’m just wondering how that fits with some people on here thinking those with high functioning autism or Asperger Syndrome can’t have severe autism?

as it depends on the definition of severe autism and this is really our difficulty. If we don’t know what the words mean, how can we communicate effectively about what the problem is.

@PearCrumbleCustard I think you have misunderstood me, or perhaps I did not explain myself correctly.

When I said ‘verbal’ I meant the ability to say words. I don’t think the ability to say words is the same as communicating and it can mislead.

People assume my child’s communication to be more advanced than it is because he says words but he is mostly just repeating things he has previously heard or read. It’s very difficult to actually communicate with him in the here and now because the understanding isn’t there (or maybe it is because he can’t verbalise it). He can’t communicate his needs, it’s like a guessing game everyday to work out what he needs.

He was never considered to have a language delay because he spoke words. Speaking words is not always communication.

I didn’t mean that people who can’t speak words verbally, ever, are not affected severely. I was more meaning the assumption that being able to verbalise words means you are not severe because you can ‘talk’. Repeating words isn’t really talking.

He was never considered to have a language delay because he spoke words. Speaking words is not always communication. Language is the putting together of words, speech is the saying of words. Your description is of delayed and disordered language. A SALT once told me that ds had the severest language disorder she had seen. It was one of the most helpful things she could have told me because he has beautifully clear speech and echolalia. His language has improved and he can now use it to communicate though it is obvious he has difficulty.

@Itisbetter So maybe he did/does have language delay?

If his language didn’t develop in line with his chronological age then he is language delayed, if it came on a different developmental path then he is also language disordered. Typically this might be, knowing lots of nouns or chunk phrases but not being able to put them together, not using verbs or pronouns at all or misusing them, not managing past or future tense, struggling with under/over/behind/above yet knowing colours numbers etc etc. Interestingly although Aspergic children talk early they often have subtle markers in their language (or so a SaLT told me). Language deficits in the greater population (ie non autistic) are more commonly associated with LD, damage, or extreme neglect.

I don't think age of diagnosis is an indicator, either. I've found that once a child has one diagnosis, professionals are quite relieved and happy to let that sit, even if presentation can't be explained by it.

DD1 went from global developmental delay (2.9) to GDD+ brain malformation and epilepsy (3.4) to MLD + brain malformation and epilepsy (5).

Then she sat with those diagnoses for 10 years. At 15, finally ASD was added. Now at 17 they are thinking ADHD needs assessment, too. But only because she's struggling so much. The traits have been there since she was born, pretty much.

I whole heartedly disagree with you OP, because if you start adding different labels for people with varying severity of autism, you will need to do the same with ADHD, DCD, Dyslexia, Cerebral Palsy, Torettes etc where does it stop?

I'm not saying this as someone with no knowledge my DH has Dyslexia and DCD, my brother has Cerebral Palsy (all 4 limbs are effected, he is non verbal and needs 24 hour care) and Autism, my DD has DCD, ADHD (medicated) and is borderline for Autism.

But there are lots of diagnosis where severity is added to the dx (and there are levels attached to asd anyway).

Let’s look at it another way. How is it helping NOT to be able to discuss different groups?

I guess my thinking is that good robust descriptors would make conversations easier. It would be nice not to have to stop what you are discussing to redraw lines on the meaning of functional or play guessing games about are they in ss or ms or early diagnosed or late and if they can talk is it functional and what do we mean by functional?

Adding descriptors such as high or low functioning, Asperger Syndrome or the levels used in the DSM-5 or other similar descriptors wouldn’t solve that though. Even within different ‘categories’ there will still be differences, different needs, verbal and non-verbal , early and late diagnoses, DC in MS/SS/other provision…

@JustKeepBuilding This is a good point; although I feel that people, broadly speaking, knew the difference between 'Autism' and 'Aspergers', and typically people in either category had more similarities than differences.

Due to my son's presentation, there is very little point in saying he is on the Autism Spectrum, I may as well do away with the diagnosis and instead have a list of traits and behaviours?

Yes there will never be anyone exactly like someone else, but I don’t think that means we have to just leave an unhelpful lump. I think being able to clearly describe yourself is important and not being able too (particularly if getting it wrong draws anger and upset) is crippling progress.

How you do it, I honestly don’t know. There wasn’t brilliant clarity before the merging but I really don’t think that means their can’t be.

I don’t know what the solution is. I do think that part of the problem is not having a definitive understanding of what words like ‘severe’ and ‘functional’ actually mean. ‘Severe’ appears to be very subjective.

I’m not sure people did know the difference between autism and Asperger syndrome. You only have to look at this thread and the previous one to see that. Many certainly don’t know what high and low functioning actually mean.

I’m also not sure people in each category always have more similarities than differences. To give an example, DS3 and my neighbour’s DS would both have been said to have HFA, but they have vastly different needs, more differences than similarities, although obviously they do share some similarities as they both meet the diagnostic criteria.

Every human being shares some similarities and differences though, the same could be said for any two people. Is it really beneficial for two people who share 'some similarities' but have more differences, and vastly different needs, to share a diagnosis which is so broad it really says nothing about the individuals?

I could say my son has Autism, or I could say he is hyperactive, struggles to listen and with organisation at times, and his social skills are unusual. The former is largely unhelpful and uninformative.

But that would still happen even if you split the diagnosis up. Even if you split the diagnosis into e.g. low functioning autism, high functioning autism, Asperger syndrome (or other similar descriptions) there will still be vast differences. And just saying the diagnosis is never going to be enough for anyone to know an individual’s needs even if you refine the diagnosis.

For example, just saying e.g. HFA isn’t going to give information on an individual’s needs. Some will be verbal, others won’t. Some will have significant sensory needs, others won’t. Some will display VCB, others won’t. Some will be incontinent, others won’t be. Some will need significant support with ADL, others won’t. Some will be in MS, others in SS or other provision…

Perhaps I am not explaining myself well.

What is VCB?

Very challenging behaviour.