What Determines Level of ASD?

[sammythemummy]

Is HF determined by how verbal a child is or how social?

Eg:

Child 1 (Lets say they are both 3 yo)
Speaks in 1 or 2 word sentences, has expressive and receptive lang delays but is very sociable, plays well with other kids, has good eye contact with people he knows, no sensory issues and can read people's emotions.

Child 2
No speech delay, speaking may even be above average. Has sensory issues, does not do well in social gathering, has poor interaction, rigid routine.

Which one of these children would be classified as HFA?

TBH I felt that professionals banded about HF for us as a bit of a sop, to cushion the blow and then later to deny need.

I hate it.

DS2 was given a diagnosis of Aspergers. From what I've read, I am under the impression that they decided on Aspergers rather than HFA because he had no speech or language delay.

Part of his assessment involved getting a score in various different areas of difference/impairment. He scored quite high (i.e. quite 'autistic') in all areas, especially obsessive interests and repetitive behaviours.

I think that 'spectrum' implies a linear scale, whereas the reality of autism seems more complicated than that.

I think of autism manifestations as sort of like the graphic equaliser on an 80s stereo, with the lines going up and down. In terms of the triad, for example, my friends son is PDAish with a diagnosis of autism. My son has a diagnosis of aspergers. Her son is in some ways 'more disabled' at present in that he is unable to cope with mainstream school and has extreme challenging behaviour at home. On the other hand, he is very much more functionally communicative than my son, as he has good surface sociability and is well liked by classmates and has quite a wide group of friends. My son has a small loyal group of friends but doesn't speak to anyone other than these 3 boys very much, I suspect the rest of his class hardly knows him. My daily life is substantially less impacted than my friend's because of her sons high level difficulties around flexible thinking ( a peak on her son's autism 'graphic equaliser' compared with his social communication) whereas my son's flexible thinking 'spike' would be relatively much lower than his communication 'spike'; as he gets older his difficulties with flexible thinking mostly show in having no repair strategies and panicking when things go wrong. But he is in the worst 2 or 3 kids with autism I have seen in his motivation for social interaction and communication (he is able to speak very well, with a vocabulary apparently at the 99th percentile).

So who is 'worse'? In DLA eyes, my friend's son, by miles, because she gets carer's allowance and high level mobility (he runs off or refuses to move sometimes) and care in DLA, whereas we get nothing because my son does not disrupt much and given the choice would spend his life in his room on the computer, hurting no-one but interacting with no-one. Ironically, I suspect that her son will be a more functional adult, but we will see.

IQ was never part of the diagnostic criteria. Somewhere along the way function and IQ became conflated and then became short hand for high and low function but it is a meaningless.

Some people still use these terms as they use the terms severe or mild but it seems to be an outmoded way of looking at autism. The move appears to be towards breaking down component elements and dealing with them separately.

Even more reason why a 'one size fits all' approach to intervention will never work. Whether it is SLT, ABA, OT or anything else.

Ilikemysleep - I understand what you mean. I know a woman whose son has autism and was non verbal and has an intellectual disability and had very challenging behaviour but she says to me, he has never known he is different and the kids in school were always nice to him, and the staff understanding because he was obviously so different.

That doesn't mean he has an easier life than my son who is more likely to be housebound with crippling anxiety than hers but ostensibly has much better life chances. It means their experiences of autism are different and needed to be responded to individually and differently and not with generic intervention.

Labels don't help.

Nothing more to add. The term spectrum, as Threebee said, is often thought of as a linear one. It's a multidimensional surface. With peaks at various points.

I wish there was more literature readily available for nursery staff and teachers for them to understand how the spectrum is so vast. My own sister who is a Montessori teacher in US had no idea what the spectrum really means.

Inappropriately - I have just thought about it some more and I think maybe this sums it up: My friend's son is fighting against a world he doesn't understand. He has the fight in him and is actively trying to change things around him, actively engaged with it. My son withdraws from a world he doesn't understand, and the world doesn't even notice he's gone :(

zzzzz said I do think underlying IQ is important. Absolutely without a doubt ds would not have the quality of life he does if his IQ was below normal.

This is how the difference of IQ can show itself. She has written a book now - I met her, the young lad I used to care for had common therapists with her - but I knew her some time before she started "talking" - she was maybe 6 years old.

If not for her parents encouraging her though, where would she be?

"Potential scientists who cannot function..."

Yep - that pretty much describes ds1.

DS has Aspergers average IQ above average in areas. Fully verbal from 9 months. But he still has specific learning difficulties along with bits and pieces.

However the stance in the report follows on stating moderate to severe ASD life long.

Sometimes its the co morbids that our children have to endure with it that causes no end of difficulties throughout their lives and HF I feel, really does not take this into account at all.

We have the same struggles with DS - he has a high IQ, off the chart verbal skills (with delayed onset) but has all the social communication/routine/sensory/organisational etc. challenges. Because he is so bright, he "chameleons" well, but at a significant cost to his mental health.

The "HF" moniker is equated with "quirky, but he gets by just fine". My kid is no Sheldon Cooper... he is more of a Sherlock.

zzzzz I was agreeing with you - I think Carly is coping better now because of her ability to adapt.

Sorry if I was unclear.

My DC's have only currently been dxd with 'autistic traits'.

DD : low IQ, moderate learning difficulties. Most demand avoidant, most likely to lash out when overwhelmed, very hypersensitive, dislikes noises, doesnt do well in crowds, had speech delay, has hypermobility, dyslexia, dyspraxia, dyscalculia, auditory processing issues, least likely of my DC's to live independently.

DS1 : high IQ, well into the 130's at 8 & 10yo, no social skills, didn't have speech delay - in fact his speech was very advanced, under sensitive to sounds, touch, withdraws, anxious, lonely, amazing mathematical and scientific abilities, will do well academically but have trouble forming and keeping relationships & friendships, doesn't even notice crowds, just barged past them, no respect for authority. Will probably live independently but will need help. Most like Sheldon...

DS2 : average IQ, severe speech delay - first word spiken at 3y7mo, severe Hypermobility, dyspraxia, wants friends but is delayed with social skills, I think he is hyperactive, but inattentive type, always struggled with eye contact, but a grafter and despite being the 'most' disabled of my DC's, is also most likely to live independently and have a fulfilling life.

DS3 : Speech delay, seeming to have some Auditory processing issues, seems to have good maths skills for his age, at least with what he can show me, assessed as hyperactive 'with a high probability of ADHD', severe sensory issues, life threatening allergies, not really social, lacks eye contact except with me and his dad, God only knows how he will develop!!

IMO, they are all on the Spectrum, but in different places. Just my opinion currently, but assessments are coming. DS3's is first, then DD's.

The spectrum is wide...

But zzzz my point is there is no such diagnosis as HFA/LFA in the diagnostic criteria and there never was.

IQ is clearly not part of the triad of impairments. So where has the talk of intelligence come from and why has it been conflated with function?

The talk I went to partly attributed this talk of IQ to the early work of Wing which was with children with intellectual impairment and autism so that it became part of what people thought of when they thought of autism

This is one topic in which you could talk until the cows come home and you will not have an agreement. Even the experts on the panel for DSM-5 don't agree. Then there is the added complication of perception. One set of parents might be able to cope better than the next one with the same kind of dx, depends on access to support, money etc. So a seemingly HF kid could flounder/self destruct in a MS but equally a LF child can flourish in a specialist environment .

It really is meaningless talking about HF/LF. Autism is Autism, full stop. Without appropriate support, it ruins lives just like any mental health condition.

I prefer neurological difference. Autism without learning difficulties isn't intrinsically an inferior or worse way of being, it is only 'handicapping' (used in its truest meaning) because of cultural expectations and society's difficulty in tolerating difference (eg by adapting schooling). I certainly don't think autism is a mental health condition, though clearly it increases vulnerability to mental health conditions such as depression.

Anyone familiar with the SPATS model?

Apologies, I meant neurological disorder in this instance.

Dev - people can argue about what HFA etc mean but the reality is there is no such term as HFA in the previous or new DSM criteria.

Thus, it should not be accepted by parents as it is entirely meaningless term as a matter of clinical diagnosis and science!

I agree with that.

This has been really eye opening. I've been very puzzled about all this.
DS got Dx at 2.3 (now 2.5 years) and they just said 'autism: at present symptoms are mild'. Said they can't use Aspergers til older and might not anyway. DS is bright and v verbal- precocious speech - but you can see the autism when he blanks us, doesn't greet, scripts, runs looking backwards etc. I still don't really understand what 'functioning' means; sometimes it seems to mean 'passes for NT'. Would like to see slides from that research presentation.