Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

@Spendonsend I can see that and agree. I think that treating anything that is comorbid needs to take the autism into account. Communication is so vital, I wouldn't want anything doing to me if I didn't know why it was being done so why should someone with autism be any different? I just think for diagnosis they need to be kept separate kind of like autism is all there all the time (in whatever form/ descriptor/ new diagnosis is created) then anxiety is something which adds into the mix. If there were new descriptors/ diagnosis and anxiety was included in whatever severity/ functioning level I would worry that it would be tempting for services to use that level as an excuse to not support (it does happen, the number I
Of times I heard "but they can plateau and ot/slt/ xyz wont help anymore" from the nhs, they were wrong) or if supported would then really show that their autism is a different level defeating reorganising the dx.

I hear you in regards to the LA, it would be OK if they just followed the SEN law.

But we're not high functioning. I need a lot of support from my parents. I can't work and don't have a long term partner or kids. So why am I lumped in with my friends who are Autistic who do have those things?

There is an in between.

No there isn’t an in between with high or low functioning. By definition low or high functioning is about IQ being below 70 or 70+, not about whether you can work, have partner, DC or anything else. You and fluffy (and sadly many others in society) are using the functioning label to mean something it doesn’t.

@SouthCountryGirl if you redefine HighFunctioning I guess it could mean whatever you want, but in this context no you are not a low functioning autistic. How do I know this? Because you don’t have a LD

Show me where I said I was low functioning? I haven't. At the same time I shouldn't be lumped in with friends of mine who are able to have a full time job, they're married, etc. Why when I've got needs am I lumped in with someone who is more independent? We don't do that for many other conditions.

Of course there is variance in severity in all sorts of diagnoses. Do you feel you have more in common with LFA or with NT?

There is no Medium functioning so EITHER you are HF or you are NT, because LFA can’t argue on the internet.

You’ve got friends. My son hasn’t.

Your information is outdated. LF or HF are not used in diagnosis or by healthcare prefessionals. There are now considered to be 3 functioning levels of ASD. So technically there is a middle.

www.luminouscounseling.org/blog/understanding-the-3-different-levels-of-adult-autism/

theplaceforchildrenwithautism.com/diagnosing-autism/the-three-levels-of-autism

High functioning and low functioning may not be used as part of new diagnoses anymore, but they are still used in society (often to mean something different to the true meaning) and are still part of older existing diagnoses.

The levels used in the DSM5, which often isn’t used in the UK as the ICD is often preferred, are not high or low functioning labels. They are about the support required, not IQ like high or low functioning.

@JustKeepBuilding. I would much prefer saying my daughter has ASD3 than low functioning autism.

Her severe learning difficulties, which though not uncommon in people with ASD, are a not a direct result of her autism. Therefore should be treated as an additional complex need alongside her diagnosis of ASD as it is in her records.

Her (simplified) diagnosis is ASD coupled with severe learning difficulties and GDD.

And that is, of course, a perfectly valid choice, and I agree with a move away from high and low functioning descriptors, but the DSM5 levels aren’t functioning labels, which was the point of my post. The now deleted poster itisbetter was originally responding to was using functioning labels and then adding a medium functioning level which doesn’t exist.

Her severe learning difficulties, which though not uncommon in people with ASD, are a not a direct result of her autism. Therefore should be treated as an additional complex need alongside her diagnosis of ASD as it is in her records.

I haven’t said otherwise.

I would much prefer saying my daughter has ASD3 than low functioning autism. I DO understand that but LFA is actually clearer.
Personally the Levels (which I think are levels of severity not function) are really problematic for me as it’s fairly hard to see which group you would be in.

@Itisbetter I can see that too. It's such a complex disorder isn't it?

@JustKeepBuilding Sorry, I wasn't insinuating you had said otherwise. I was just clarifying my opinion which is based on my own experience with my daughter.

I think one thing we can definitely agree on is that much more research needs to be done in reguard to ASD. As an individual neurological disorder and when presenting alongside other conditions/disorders.

Those are American, three levels aren’t used in the U.K.

www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-assessment/adults

I

I care for an autistic child (3yo) - very clever, thinks logically compared with typical 3yo and will try to sort out problems alone (climbing up on chairs to reach for example), can read (but not put together in a story), high level of numerical ability. Uses resources in a way most 3yo wouldn't in combination. Overall very clever in the academic sense.

Struggles to tolerate adult direction and interruption to own agenda, doesn't understand or care that throwing things in anger will hurt others. Single word or simple sentence communication. Had sensory issues around being wet/messy play.

If you are autistic what would you do to support this child? While this child needs to learn to fit into a NT world, their own way of learning and discovery is very different to a typical 3/4yo and I'd like to support that rather than force the things that are difficult over things that help learning.

I'm NT so it's hard to understand how differently this child is thinking and seeing the world compared with NT 3/4yo.

Yes. I prefer their way of "catagorizing" ASD.

It isn't true that the DSM 5 levels are universally unused in the UK.

In 2015 I was given a DSM 5 ASD diagnosis with a specified level, by an NHS regional adult ASD assessment service (as well as an ICD-10 diagnosis of Childhood Autism, and a recommendation that existing resources on Asperger's syndrome might be useful).

Especially in adult services, you can't make blanket statements about what does or doesn't happen WRT diagnosis in the UK.

Could you learn some basic signing to support language? Not loads but just some essentials.

Hi, I'm nt but my child was dx very young. I'm not sure how it works if not a nursery placement but i would think if you're a registered child minder you can put in for an ehcp assessment. The child can have an ehcp before starting school and if needed it be really helpful for the child and family to get the ball rolling before they go into reception.

This will help you too because they can be assessed by an educational Psychologist as part of the ehcpna. This isn't at cost to you it's usually part of the sensory assessment. Ot znd slt assessments sound like they'd be helpful too.

In the meantime sensory stories, symbols, other visuals, objects of reference, signs, visual timetables, predictability, now and next boards, sand times and countdowns may be a really good place to start? Best of luck xx

Should say statutory assessment not sensory assessment.

@Tumbleweed101 if he can read use it for instructions, everything from “your raisins are on the piano”, to “please wash your hands”. Also use them for dairying and ordering so language becomes part of his making sense of the world. Eg a photo and a sentence for each activity you have done. Can he put them in order? Breakfast, walk, park, snack, tv….etc. You can also do this as a predictor/schedule. Long line of Velcro on the wall, cards with what’s happening, done-post-box. So you do the activity, take the card and post it in the box and then look what to do next.
nb I’m not autistic but my child read long before he could join words together.

I've been following and participating in this thread for its duration. What stands out to me is that it seems the families of those most impacted directly by autism (the people who because of their autism disability are unlikely to be able to take part in the thread and require people to advocate on their behalf) are the ones wanting the dx to be separated. Why are the more able people with autism the ones against a diff dx? What impact would it have if those most severely impacted had a diff dx to autism eg severe autism, profound autism etc?

@Itisbetter is your son hyperlexic? Mine is but it was put down as a splinter skill as they don't dx. Now he's older it doesn't make much difference as his age group can all read too.

He read easily and way ahead of his language skill but he doesn’t read much and I doubt has got much past primary. It’s much easier for him than verbal communication

My son could read before he could use single words to communicate meaningfully (naming objects). He doesn't read books.