To think there needs to be a clearer diagnosis than just Autism?

[wiklowarrior]

As in, 'Autism such and such'.

I'm a professional woman, had a good job (before becoming a carer), married, nice home, friends. I'm also autistic, which was once diagnosed as Asperger's (and is what I was given). That's no longer the case now. As a child, I was eccentric to other people, always played alone, unless my nightmare routine was disturbed. Spoke extensively about my favourite things in great detail. Then you'd see more obvious signs. Overall though the entire thing leaves me exhausted. It's the masking that does a lot of that.

DS was diagnosed with autism before he was 3.

He can't speak a single word, and doesn't respond to simple language communication such as 'Get shoes'. He is a complete flight risk, would run into roads in a flash. He is in nappies. Never been able to toilet train him, despite numerous efforts (of which were all very obvious weren't going to work, because he does not communicate and doesn't seem to have a desire to). He is hyperactive, climbing another danger. He runs face first into walls. Attacks me, attacks other children and just anyone really. He destroys most things I've ever owned really. But very clever at working out locks and reaching high places. I see the frustration in his face every day and it breaks my heart. My own autism is exhausting.

Can you imagine then if I couldn't speak a single word, have the ability to use sign language despite years of effort? Couldn't use picture exchange? Couldn't even POINT to what I want or need? It's obviously very much a harder deal for him. His autism is severe. And I think a label for that would be useful without having to go into detail in multiple examples of telling people about him being autistic.

He does not attend the local SEND school specifically for communication disorders because he's too disabled by his autism. He attends a very good special needs school for a variety of very complex medical and autistic needs and it's the best school for him.

Yes I know masking is hard, even for those of us appearing 'high functioning'. But at least we have the option? Surely? DS and others like him don't.

He will (should) be diagnosed as having a moderate- severe learning disability (or intellectual disability) eventually. That's the distinction when you use the term "high functioning" - because people with autism don't want to be associated with those that are "low functioning'/ have a learning disability.

@VividGemini Sorry to jump on your response but what would you say to someone you're apologising to in public?

I often say 'So sorry, he's autistic'. And sometimes people are very nice and say 'oh such and such is autistic and they've just got into uni'. Or 'oh my granddaughter is autistic and she works at such and such'.

I just don't think saying autism is enough, especially when there are so so many of us who are fully functioning, even if it's masked

I agree. I have ADHD and 5 year old DS2 is being assessed soon. There are three types of ADHD because it presents so differently (inattentive, hyperactive/impulsive and combined). I imagine autism would and should have many different sub types. I suppose the difficulty is in the diagnosis? But I do agree when there are clear differences then a less vague diagnosis would be much better. for you. I know how hard masking is.

[quote wiklowarrior]@VividGemini Sorry to jump on your response but what would you say to someone you're apologising to in public?

I often say 'So sorry, he's autistic'. And sometimes people are very nice and say 'oh such and such is autistic and they've just got into uni'. Or 'oh my granddaughter is autistic and she works at such and such'.

I just don't think saying autism is enough, especially when there are so so many of us who are fully functioning, even if it's masked [/quote]
Well the majority of people with autism also have a learning disability, they are just often the invisible ones.

You don't have to mention anything. You can just apologise.

Tell them is a spectrum disorder. Because it is. Or just ignore them if they are being wilfully ignorant to not notice the difference in the way your son presents to their so-and-so.

@Fireworksatforty

I agree. I have ADHD and 5 year old DS2 is being assessed soon. There are three types of ADHD because it presents so differently (inattentive, hyperactive/impulsive and combined). I imagine autism would and should have many different sub types. I suppose the difficulty is in the diagnosis? But I do agree when there are clear differences then a less vague diagnosis would be much better. for you. I know how hard masking is.

Autism doesn't have sub types. It's a spectrum condition so affects people in different ways. Most of the distinctions people want to make are about the intellectual ability of the autistic person, but you don't do this with other conditions - for example you wouldn't say "well he uses a wheelchair so must have a different type of autism to me".

Thank you. I feel very bad now as these people who've given examples aren't being rude and I think they say it to be nice

I know people will look at it as a spectrum of spikes. For example, yes I'm appearing very average and not autistic at all to members of the public but I can't handle certain textures and DS doesn't give a toss. Or I feel very socially anxious but DS genuinely doesn't care or have awareness of that and is entirely caught up in seeking out things appealing to his senses

But then I have to argue, that's because he's so disabled by his autism that he doesn't have the awareness to feel those things

@VividGemini

I know it doesn't. I was agreeing with op. I know it's a spectrum.

I agree. I think the loss of the diagnosis of Aspergers is not a good thing. I think it hides how truly difficult it is to be autistic and not high functioning like your DS. All being lumped together as autistic is not helpful.

Why exactly was the Aspergers diagnosis dropped?

@IsolaPribby

Why exactly was the Aspergers diagnosis dropped?

Because its not a separate diagnosis. The only difference was the presence of intellectual disability.

@redpandaalert

I agree. I think the loss of the diagnosis of Aspergers is not a good thing. I think it hides how truly difficult it is to be autistic and not high functioning like your DS. All being lumped together as autistic is not helpful.

I'd argue it is helpful. We wouldn't say the same about schizophrenia, heart disease, anxiety, diabetes, depression, personality disorders etc - that they are different conditions because someone has an intellectual disability.

How do we differentiate between what's the Autism and the intellectual disability?

Also I'd be interested to know if the intellectual disability is like a branch from the autism my son has?

Is the same genetics involved that made him autistic the ones that have made him disabled intellectually?

I agree with you OP. The word 'Autism' has become very diluted.

I have two autistic DC, one is definitely far more severely impacted than the other. Neither have intellectual disabilities. The social communication difficulties of my severely impacted one is what sets them apart.

I agree there needs to be some distinction

@wiklowarrior

How do we differentiate between what's the Autism and the intellectual disability?

Well intellectual disability affects functioning, IQ, understanding etc. Autism affects social communication, imagination sensory integration. The diagnostic process for autism is broadly the same.

It's different for every person as Autism is a spectrum. But also maybe you don't need to identify what's Autism and what is intellectual disability.

I think perhaps in situations as you describe I'd say 'I'm sorry, he has a learning disability' rather than autism. It avoids the issue you mention and is a term people understand.

Such an interesting conversation to have. I work with a range of autistic students - the ones I work with don't have any learning difficulties, as such. It's so very interesting to see their different strengths and weaknesses and personalities and how they are impacted by autism.

Incidentally, I also see many autistic traits in my son. I'm fairly sure he would have what was called aspergers

Ds was diagnosed in Denmark with moderate infantile autism. One of my Guides is aspergers, a friends child is GUA. We still use the old terms.

Having said that I heard a podcast the other day arguing for naming the level of support. So your ds would be asd with high support needs. It was from Life Kit: Parenting. We're not broken.

"It has become apparent, not just to scientists but to many in the community, that autism needs dividing into separate conditions, starting with the reintroduction of Asperger syndrome, as an important differentiator between mild and severe variants. Contemporary autism discourse and research are both skewed in favour of the verbally able autistic population at the expense of the most vulnerable and, with the growing popularity of the neurodiversity concept, this gap is sure to increase. It’s high time that changed and that the lower end of the autism was treated with the seriousness it deserves. The wellbeing of some of society’s most vulnerable people depends on it."

www.theguardian.com/commentisfree/2019/aug/26/autism-neurodiversity-severe

It's a difficult one;I have 2 children with ASD and they present extremely differently.

DD 16 appears neuro typical;she's mature,polite,articulate,empathetic,very capable and preforms extremely well academically;she doesn't fit the typical symptoms of ASD but she's an absolute champion masker.Still battling for a diagnosis;CAHMS have been useless.

DS 12 fits appears neuro divergent;he was diagnosed aged 2 years & 10 months as his ASD was quite obvious.

* I agree with you OP. The word 'Autism' has become very diluted.*

^I completely agree with this

I’m with you. And FWIW the Aspergers diagnosis hasn’t completely disappeared yet but it soon will. I have a child who was diagnosed as having Aspergers in 2019/2020, it just depends which diagnostic manual the professionals are using.

But my child is intellectually ‘gifted’ and masks incredibly well. Most of the time, and especially out of the house, he appears neurotypical. He’s not which is evident in the rage and aggression we get at home once he’s dropped the masking, and the extreme rigidity around certain things.

I often feel like a fraud using the label ‘autistic’ for him when I know some people suffer terribly with the condition. But I also don’t use Aspergers freely because people get uppity about it not being a valid diagnosis (it is, it’s on his diagnosis letter).

I think subtypes to group similar levels of severity would be really helpful. We do have the option of using ‘high functioning’ but it’s incredibly ableist language.

@helpfulperson

I think perhaps in situations as you describe I'd say 'I'm sorry, he has a learning disability' rather than autism. It avoids the issue you mention and is a term people understand.

See I might be wrong but I thought people most popularity thought of things like Dyslexia when you saying learning disability.

And a website I've just had a look at said learning disability shouldn't be confused with the term intellectual disability