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.

Pompom. Ds has very much been rather “fluid” with things becoming worse as he gets older. His presentation now at 13 is very different to when he was diagnosed at 6. We now have the fun of puberty to add in which seems to be making things even more complex.

I dont know how you would be able to quatify this as the timing coincides with austerity, covid, brexit etc so public services have got worse for everyone. (I think the change was 2013)

Has it increased provision?

Socially: I think it's both increased and decreased at the same time. Fo example queue access, more places are allowing quicker access because of the increase in pressure to make adjustments due to having to meet need but more people are using the provision. Theme park queues are a perfect example or airport fast track. The queues now at the access line can be the same as the normal line but some wouldn't have given this provision previously.

Nhs/ social care: again there (anecdotely) appears to be more slt's, disability sw's, ot's, ep's etc but more demand for them.

Research: the big one I can think of is the autism genome one from a couple of years ago that got paused just as it was getting up and running. We were included on the 100000 genome project because the way my son presents and our family presentation is different to most people with a dx. Personally I would like to see more genetic research and genome therapy which I think as in the autism genome has been impacted due to political correctness and fear by some professionals as being included in eugenics (my opinion). Some people who are less impacted by autism seem to see it as part of their identity so looking to cure (for want of a better word) is taken as eugenics.

Inclusion: no not really, people understand autism to generally be something different to my son. They aren't prepared or expecting someone like my son. I do wonder if this is to fo more with how it is presented in the media. The more classical form of autism isn't as widely depicted on TV etc. Sometimes when issues which effect families like mine are raised on social media they are shut down. It feels a bit like my son isn't included in the dx and is more a dirty little secret in thd wider autism group. If his needs are discussed they are often put down to learning disability which isn't the case.

@Spendonsend I’m not expecting quantifiable data, more personal opinion. Both aspergics and autistics experienced the same economic scenery and I think most of us can factor that in to our thinking.

Socially: I think it's both increased and decreased at the same time. Fo example queue access, more places are allowing quicker access because of the increase in pressure to make adjustments due to having to meet need but more people are using the provision. Theme park queues are a perfect example or airport fast track. The queues now at the access line can be the same as the normal line but some wouldn't have given this provision previously.

I know places like Merlin resorts have had stick for having tightened their ride access system so people need to have a proven issue with queuing - not just in receipt of dla - but I think that is much better as it helps to focus the support on where it is needed.

at the other end of the spectrum since covid the sunflower lanyard scheme has become so widespread that in my opinion it means nothing because most people associate it with not wearing a mask rather than it’s intended purpose.

I'd like Merlin to go further. I believe they aren't allowing Dr's letters or if they do they have to be backed up with something else but the access card that they accept will take a gp letter. I personally think if letters are to be used then it should be a specialist or a social worker.

The sunflower lanyards now are pointless too, too many people use them and you didn't need any proof to get them and yes I agree many think it's about mask wearing.

We also find that my son can't access groups that are specifically for autism because his needs are so different. The groups are aimed more at what was aspergers/ high functioning even things loke the autism friendly cinema showings.

I'd like to see more people like him on TV. There was a character on a prog called a town called eureka but that's a sci-fi show znd the child lost all his needs and became "normal".

Where do people like my DS, fit in (in terms of diagnosis and support)? I would describe him as ADHD with social oddities or ADHD with Aspergers traits. An ASD diagnosis does not describe his profile, and actually proves unhelpful a lot of the time. I even question if the ASD diagnosis is correct. As I have said, I personally don't believe the diagnostic process to be foolproof, especially when someone has a spiky profile like my DS. Where does the ADHD end and where does the ASD begin?

It actually would be much more helpful for my DS to have a list of 'traits', for example:

• Hyperactive & distractible
• Needs instructions to be clear and repeated
• Headstrong and likes to 'do his own thing' - but also a people pleaser!
• Very sociable and easy-going, however some social oddities which need to be navigated

Having an ASD diagnosis and the spectrum being so broad with so many traits, sometimes ones that conflict; it doesn't tell you much about my DS at all. It often means people think he has specific and stereotypical traits, which he does not have. This is problematic.

I feel as though there is a natural organic split happening where people who are able to are using neurodivergent, and moving more to a minority or affirmation model of disability, celebrating autism (or being neurodivergent) but this really leaves behind people who view themselves as disabled, who have historically acquired trauma and who are not able to join the discussion due to the severity of their communication or learning disability needs. It worries me that we will be back to the little professor stereotype.

See I think my son would have had aspergers as he had no early language delay and has an iq of over 70, but he also cant access the local autism group because its too noisy and unpredictable, he cant go to autusm friendly screenings because he doesnt get that people stim other than him. So whilst he tip toe walks and flaps and thats just fine in his mind, but someone else doing it would be too much. He doesnt go to theme parks as he couldnt manage them. They are too stimulating and he would become dangerous and try to climb up things too and hang upside down to help himself re-regulate and would lash out at anyone trying to stop him. I think these things have very narrow ranges that fit them.

I would like to see more chikdren like yours in tv though.

@Spendonsend That's so interesting.

My DS can also participate in all parts of 'regular' life; cinema, theme parks, after school clubs. He doesn't currently need ASD specific screenings or support. He gets overstimulated but in a hyperactive and excitable way, and we need to have firm boundaries and keep an eye on him, but he could still participate in whatever was going on. He isn't angry or violent at all, he's just a very over the top happy child 😄

Which is why I think, in a lot of ways, describing people as having 'ASD' or 'ADHD' or 'SPD', unless in the classical sense, it's not particularly helpful. Rather, it would be better to look at individual traits and personality.

It may be increasing anxiety @PomPomChatton My son is as autistic as he has always been (he’s non-verbal, adult, has severe learning disabilities), and has made a lot of progress in areas like language and communication but he is very much more disabled, very much less able to access the world than he was. It’s all due to anxiety which rocketed in his 16th year and has stayed extremely high since. And his environment is entirely run around him and his needs for 24 hours a day now - so it isn’t about needing to fit in or bend or anything like that. Doing that does help but he is still far more anxious than he was at 13 when we were out and about together all the time.

That increasing anxiety with adolescence is common across the spectrum. I guess it happens with NT kids as well but they have more resources to manage it.

See issues with queueing is not the be all and end all in this. My dc doesn’t particularly have issues with queueing BUT once we get to the front of the queue will decide she can’t cope with the ride. So we would waste most of the day queueing for rides she then couldn’t go on. Ride access means we can go straight to the critical decision point and then come away if it is too much (Which we often have to). It also often by-passes a lot of the ‘themeing’/atmospherics of the ride which are too overwhelming for her.

Yes, aren't the main concerns with those who are 'severely' autistic the co-morbidities like GDD and learning difficulties, rather than the autism itself?

So your DC's struggles are 'worse' because of his learning difficulties?

@Rainbowclimbinghigh Im not sure what you’re saying? Do you mean people with more than one disability may struggle more than those with only one dx?

I agree @lolly07766

My friend's daughter has very high level needs and will never lead an independent life, needs 24 hour care, she is an adult and cannot speak or make most of her needs known. She also is very complex and violent when distressed.

Neighbours child is geeky, social to others although has his own interests, clever, and very able and will live an independent life and a great one.

Some get annoyed with the high or low functioning descriptive but clearly they have vastly different needs. Yet some feel offensive to suggest his needs aren't as great as everyone else with autism.

He is mild and she is severe but some don't like reality and use of mild

@Itisbetter - I mean, aren't the obvious disabilities - non-verbal, inability to dress oneself etc, caused by global development delay and learning disabilities rather than autism?

"He is mild and she is severe but some don't like reality and use of mild"

Because it minimises the struggles we have. "Mild" is how others see it.

I have a diagnosis of something and in my notes it says mild. Because that's true. I need a bit more help than those without my condition but less than my friends son who is classed as moderate to severe.

You can certainly get misdiagnosed. A family member was put on the pathway years ago and told definitely not ASD

Fast forward to secondary school.and increased struggles and now told yes ASD ( would have been Asperger's)..when questioned about the complete lack of repetitive behaviours/no need for routines etc...they were told you no longer had to have the triad of impairments as the DSM criteria had changed.

They chose not to accept the diagnosis as it didn't appear to fit. Some time later they were diagnosed with DLD which I understand is far more common than autism.

I often wonder how many kids have really got DLD instead.

No.

I think often part of the issue is you can separate what is the autism and what is due to the comorbidities, and what is a comorbidity from the autism.

ds has a diagnosis of ARFID, but one of the biggest contributing factors to that is his sensory issues, they are caused by his Autism. So he is tube fed because of his autism and it’s related comorbidities. Things overlap way too much to try to fit things into boxes

Language delay was part of the original criteria for a HFA diagnosis. Literally HFA language delay/disorder, Asperger’s precocious or normal language acquisition.
you’ve misunderstood if you think that the people who can’t communicate all have low IQs. That isn’t the case at all and is exactly why the dx of autism was introduced.

I can definitely see that... In fact, I would say that sensory issues caused by autism are probably a primary cause of ARFID.

But if a person is delayed developmentally, how can you say categorically that that is caused by autism and not GDD or learning disabilities?

Isn't that the crux of the differences between those with 'severe' autism and those with 'high-functioning' autism? That those with 'severe' autism also have learning disabilities as a co-morbidity and those with 'high-functioning' autism don't?

/Or sensory issues not caused by autism.

@Willyoujustbequiet

Fast forward to secondary school.and increased struggles and now told yes ASD ( would have been Asperger's)..when questioned about the complete lack of repetitive behaviours/no need for routines etc...they were told you no longer had to have the triad of impairments as the DSM criteria had changed.

Wow, this is so interesting. I also questioned my DS's ASD diagnosis, because he does not have repetitive behaviours, need for routine, obsessions. We were told that he fit the diagnosis because of his sensory seeking behaviour (which I also question if that could be down to ADHD). My son definitely fits Criteria A in the Autism Diagnosis Criteria, but not Criteria B, but we were told the same as your family member...