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.

No. Comorbidities are conditions/illnesses that occur together but are unrelated. Learning disability is not simply a coexisting condition. Learning disability are autism are symptoms of another condition. For example Down’s syndrome - you wouldn’t say someone with Down’s syndrome has comorbid learning disabilities; it is part of their syndrome, as would be autism if they had that, as would be heart problems. And ‘Down’s syndrome’ would be a much better description of their need than ‘autism’.

If you really want to differentiate then why not say "my son has a learning disability with/and autism"? Because that is the thing that separates him from 'autism without a learning disability'. People will then know he will have additional needs. But even then people won't actually know what those needs are because a label/diagnosis doesn't tell you anything specific about an individual's needs.

@BadNomad I'm talking about people whose "traits" are all severe all the time. So when people are assessed they have a severe disfunction in rigidity of thinking , a severe disfunction in social interaction and severe disfunction in social communication. This is all the time. This doesnt mean that they have to a ld. Many people diagnosed having varying levels of need in these area. Some may only struggle a tiny amount in one area or thr amount they struggle may vary daily.

An autism dx isn't the same for everyone due to each person's Individual presentation. Those who are always severely impacted all the time is who I would class as severe.

Thank you for answering. May I ask you've said that autism is autism, do you see autism as a standard with its impact uniform, the same for each person? (Really trying to understand not argue)

@Itisbetter they are all really good points and i agree. I know I'm guilty of using hf as a descriptor on this thread. It's because I'm struggling to find the words to use. I didn't mean any offence by it, I'm sorry for any caused. My own ds is in a group that would be classed as severe but doesn't have ld. It's doesn't excuse why I'm probably so invested in this but hopefully explains it?

If a learning disability was a part of autism then every person with autism would have a learning disability. But they don't. A learning disability is not a definite part of autism, unlike with Down's syndrome.

This is an interesting point, but I’m not sure it works like that. To use another example (which perhaps doesn’t have such emotion attached to it so it’s hopefully easier for everyone on both sides to be objective), wheezing is part of asthma, but not all asthmatics wheeze.

Learning disability with autism was called Low Functioning Autism.

@Cuckoosheep I have a similar young man, no offence was taken.

We shouldn’t have to pick our way through a minefield of terminology. I feel the terminology, support and research were better pre merge. The lack of clarity helps no one.

How do you know how severe or persistent those needs are going to be in a 5-year-old when they grow up?

I see autism as simply a brain that has developed differently which will then affect certain areas of function. That is something every single person with autism, regardless of what else they have going on, have in common. We have developmentally different brains. How those differences affect our function differ from individual to individual. There is nothing uniform. No two people will be the same. No two "high-functioning" autistic people are the same. No two "severely" autistic people are the same.

A learning disability is not a definite part of autism, unlike with Down's syndrome. just to correct this, there are people with Downs Syndrome with normal IQ.

They're both still asthmatic though right? Or should the wheezers have a separate diagnosis seeing as their traits are different?

Then I stand corrected on that. I'm not very familiar with DS. But that also means that other poster is wrong too.

Yes, both still asthmatic. Although to complicate matters there are different types of asthma. For example, some may have a diagnosis of cough-variant asthma.

I didn’t comment on separating diagnoses as, I think autism as one diagnosis could work if people recognised everyone’s needs are different, and also recognised ‘high functioning’ doesn’t mean what many use it to mean.

@BadNomad to be fair neither am I. I just saw a documentary about it a gazillion years ago. I’m not really into who’s right/wrong, I’m more interested in peoples thoughts on the effect of the dsmV changes to the autism criteria.

If someone has autism and a learning disability it is difficult to separate the two things out because one 'interacts' with the other so much. Using 'autism and a learning disability' makes that clear though and I don't think everyone with both has ' severe autism' if this means severely autistic traits across the board.

Exactly. The issue is people's ignorance about autism. But instead of expecting people to go learn about autism, people want to change the language around autism so people who really don't matter can have an inaccurate slimmed-down version so Mary at the bus stop doesn't think your child is Rainman.

It shouldn't be down to autistic people and parents of autistic children to make other people understand. If people want to understand there is nothing stopping them.

Anyone who matters, and anyone who cares, knows that autism is not one thing and that everyone's needs are different.

So my question is, how has it helped those who would have historically been diagnosed as having Asperger’s Syndrome to be reclassified as Autistic?

Forgetting the problems or advantages that may have given the existing group diagnosed as Autistic (HFA or LFA), what do you feel was gained for Aspergics?

Mainly - Asperger's was perceived too often as 'mild autism' or 'low support needs autism'. As I state very early on this thread, that is certainly not the case. Recategorizing it all as autism does away with that blanket misinterpretation of support needs (I am also very against levelling autism for the same reason).

how has it helped those who would have historically been diagnosed as having Asperger’s Syndrome to be reclassified as Autistic?

Asperger's covered everyone who wasn't profoundly autistic. But as I'm sure you are aware, people within that diagnostic group vary greatly in ability, skills and needs. Some lived normal lives. Some couldn't leave the house. That diagnosis wasn't fit for purpose. Changing it to just ASD meant there isn't one specific presentation at all. It reinforces that autism is a spectrum. It reinforces that people need to be treated as individuals.

Itisbetter DD2 was diagnosed before the switch and has an Asperger Syndrome diagnosis. The change to ASD has meant more people understand there is a range of difficulties, this has especially been the case for her sensory difficulties, and it isn’t just someone who is academic and has a special interest.

For full disclosure, DS3 has an ASD diagnosis but prior to the change would have been said to have High Functioning Autism not Asperger Syndrome and I have an ASD diagnosis and would have been diagnosed with Asperger Syndrome had I been diagnosed prior to the change. Incidentally, DS1, my most complex child doesn’t have ASD but other complex needs.

Asperger's covered everyone who wasn't profoundly autistic. this isn’t correct. Asperger’s required normal to precocious language acquisition and IQ normal to high.

@BadNomad

I see autism as simply a brain that has developed differently which will then affect certain areas of function. That is something every single person with autism, regardless of what else they have going on, have in common. We have developmentally different brains. How those differences affect our function differ from individual to individual. There is nothing uniform. No two people will be the same. No two "high-functioning" autistic people are the same. No two "severely" autistic people are the same.

So we kind of agree on this. In order to get the dx the person would need to be assessed against certain criteria, if they assess at being severely impacted in all areas all the time can you see how their needs will be different from someone who doesn't?

"Exactly. The issue is people's ignorance about autism. But instead of expecting people to go learn about autism, people want to change the language around autism so people who really don't matter can have an inaccurate slimmed-down version so Mary at the bus stop doesn't think your child is Rainman." This is very nieve and simplified. The use of language massively impacts research for a start. Using the genetic program in the UK that Baron Cohen was part of as an example, this had to be halted because the language used didn't make it clear that the research wouldn't be used for eugenics and the language wasn't pc. It was reworded but I'm unsure if it's started. Thus would have been incredible research around autism.

Other research claims to be once half of the whole autism community but in practise excludes those who cannot take part because of their autism.

Researchers have to be guarded and careful about what they say forbear of being cancelled.

As I've already stated the increase of people who can now access the dx who wouldn't have before skew statistics around the whe group. As more people identify in or get a dx who would be close to being nt that skews the dx too.

More language, more descriptors and more dx of different types of autism can only be helpful.

I'm not paying attention, sorry (I have the pleasure of having ADHD too so my brain is peeling potatoes while watching star trek while listening to my brother wittering on about something to do with the bird feeder while I'm typing here and not thinking properly.) The rest of what I said still stands. The range of difficulties within people with an Asperger's diagnosis meant it gave an inaccurate impression of what Asperger's was. People expected people with Asperger's to all be the same.

So the main benefit for Aspergics is “Autism” was seen as more serious and having higher support needs so changing the name gives more weight to the diagnosis which helps socially?

@BadNomad I was just correcting it, no criticism. Particularly with historic dx I think accuracy is important.

@Cuckoosheep anyone profoundly impacted by their autism couldn’t even take part in Cambridge autism research (SBC’s group) because to join in you used to fill in the autism quotient for each member of the family registering. It’s completely impossible to fill that meaningfully if your child is profoundly autistic.

More language, more descriptors and more dx of different types of autism can only be helpful.

We had this before. They got rid of it because they realised it was impossible to fit everyone into a specific box. People suffered because the world had expectations for the people in those boxes. Over time, it has become more and more apparent that it is impossible to categorise people in that way.

The autism community is just that. It's a voluntary community. I'm not a part of it. I don't really look to connect to people based on being autistic. I am more than autism.

And researchers should be careful with language. If they don't know how to present their work without using language that can be misinterpreted, or if they're not explaining their intentions properly, then they need to be educated. These are real life human being they are doing research on, not lab rats.