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.

I don't think that anyone is racing to the bottom here. We are all describing people with individual strengths, differences and support needs. To classify them all under one diagnosis is not helpful.

I understand why someone who has a child who is consistently, severely affected in every area would want an easy way to signal that. I can see that someone who lives a normal life with support but finds it exhausting might want to signal that too.

But i find it very hard to know how to categorise the middle ground. My son can speak and use a toilet so thats not severe so is he mild, is it aspergers? but then he goes to a special school which doesnt have classes. Each child just works with an adult and does therapy and he can only do that part time. Academically he is at a year 1 level in year 7 but has no learning difficulty, just asd. Is that moderate?
I dont think he will live independently without support but then there is still a lot of developing to do so its too early to tell.

The thing is OP, whatever terminology is used for these things, it doesn't prevent ignorance. Other people's reactions and opinions are going to be based on their experience, knowledge and attitude, and specifying different words to use for different parts of the spectrum probably isn't going to change that really.

I'm a teacher and do some supply teaching, so I often don't know the students in the class. If the register flags up that a student or students have asd, I know I might expect quite a wide range of behaviours/difficulties, ranging from barely noticeable to very challenging indeed. But the average person on the street isn't going to get into that or ever give any real thought to the differences between the places peoplr might be on the spectrum. When you apologise for your dc, I'm not sure it's going to make much difference what label you use.

@CrumbsThatsQuick

I don't think that anyone is racing to the bottom here. We are all describing people with individual strengths, differences and support needs. To classify them all under one diagnosis is not helpful.

But now else do you do it?

Plenty of people have said their should be a way to differentiate but nobody has suggested any sort of accurate way to do so. That’s because everyone is different in how they present. People don’t fit neatly into little boxes and people with autism certainly don’t!

It's impossible, and it changes. DD1 is 16. Her ASD was only officially diagnosed in September but she has a brain malformation and learning disabilities. She's been in special school since 4, with 1:1 at mainstream preschool before that. She did 6 weeks at preschool before they realised that she needed some 1:1, then the assessor came and said she needed full 1:1.

DD1 has had an eating disorder and is medicated for anxiety/depression. She finds social interaction absolutely exhausting and even at special school, they are having to put in huge amounts of extra support to keep her in school. She goes to a teacher's office for break and lunch to get away from all the other children because she just can't cope. We took her to an activity farm today but she found the other people too much. We were lucky that it wasn't too busy as the weather isn't great though.

Her learning is at around year 1/2 level in year 11. She will go to college to a special department and do a course in basic life skills called 'Preparation for learning'.

DD2 is 14 and also has ASD. Most people don't realise it unless they're told - she masks very well and just seems quite shy. But she struggles immensely with social interaction and school utterly exhausts her. She doesn't often socialise outside of school because she can't cope. She doesn't talk to teachers if she has a problem. She won't use the toilet at school. It's hard for her because she's expected to be 'normal', but it's all a big act.

Thank you for this thread...I arrived at it as a mum whose teacher has flagged that ds 8 maybe autistic and it is hurting my head working it out as I have friends with autistic children like op but my ds plays teams sports, academically bright not amazing but top end of class, has friends but I agree does have some signs - obsessive interests mostly and a bit socially awkward but so am I...trying to figure it out is so confusing the term autistic has become virtually meaningless as seems to mean so many different things. All I want to do is help ds but he is happy within himself not hurting himself or anyone else and doesn't think, or even know, he has any problem-the closest to a problem we can get is that school thinks his quirks may mean he is bullied at secondary I think!
The spectrum thing doesn't make sense to me either I've read so much and it just seems a catch all for anything that can't be defined.

I also can't wrap my head working what masking is and how to identify it. So if anyone has any tips I've read so much and it's referenced so much as if your kid doesn't have these traits there masking them. But how do you tell?

Dp and I watched the Paddy McGuiness show and ended up more confused still. Especially by the Cambridge guy - he said autism had 100 different genetic markers. So what is it.

Just reading this thread makes me feel normal as I am losing sleep trying to work out what autism is and if it relates to my ds. It's imprecision is causing me a lot of stress.

The criteria for ASD diagnosis is very clearly defined. Everyone who has ASD has to have all of the features of ASD to get a diagnosis. The issue comes because the difficulties that people have can present very differently and still be ASD.

@Lougle

The criteria for ASD diagnosis is very clearly defined. Everyone who has ASD has to have all of the features of ASD to get a diagnosis. The issue comes because the difficulties that people have can present very differently and still be ASD.

Very true everybody has to have the Triad of impairments to get a diagnosis It is however wrong for people who have a diagnosis of autism to think they can talk for everyone on the spectrum

t is however wrong for people who have a diagnosis of autism to think they can talk for everyone on the spectrum

That’s what really pisses me off. I have bad people try ro tell me autism isn’t a disablity in the past - strangly - non jabs jabs been uo
Do sxttayh

My son was diagnosed asd at 5 then adhd at 6. When he's on his adhd meds his autisim is prevalent but without the adhd traits are almost debilitating for him.
They're often go hand in hand together and it might be worth while looking for signs of the latter.
Having a non verbal child must be so very hard as their frustrations with the world have to come out.
My son also is boarderline fragile x and has a small chromosome abnormality even with all that his problems aren't as severe as your sons and I hope you manage to find some services to help soon.
In point though I totally agree autisim is way to broad a term.

@Elephantsparade

I understand why someone who has a child who is consistently, severely affected in every area would want an easy way to signal that. I can see that someone who lives a normal life with support but finds it exhausting might want to signal that too.

But i find it very hard to know how to categorise the middle ground. My son can speak and use a toilet so thats not severe so is he mild, is it aspergers? but then he goes to a special school which doesnt have classes. Each child just works with an adult and does therapy and he can only do that part time. Academically he is at a year 1 level in year 7 but has no learning difficulty, just asd. Is that moderate?
I dont think he will live independently without support but then there is still a lot of developing to do so its too early to tell.

But aspergers doesn't equal mild. Aspergers equals no speech delay. The fact that it was often automatically translated as 'mild' is one of the reasons they got rid of the term in the first place.

@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 agree.

I have two close family members with autism. They are completely non verbal. They will never have a job or live independently.

Similar to the OP, if it ever comes up in conversation with people who don't know them they start to talk about people they know with autism who have studied xyz at uni or have a job as such and such.

It's just not the same situation at all.

I don't know the answer, I'm afraid OP. But I agree that it's not useful having such a vast spectrum lumped under the one word, and I felt the removal of the term aspergers just amplified this.

The use of Asperges just belittles it. And where would the cut off be? Why is it only learning difficulties that are deemed worthy of the title Autism?What about the devastating mental health issues and many other traits that can have a big impact on life?

@Latenightpharma - i didnt say aspergers was mild it was too seperate points. Im sorry if tgat wasnt clear. I was asking a series of questions of how so you classify something that isnt clearly at one extreme or another. I wasnt answering the questions with an answer. I am still baffled.

@Flamingolingo l was most interested in your description of your child's autism. My daughter and l have always had a feeling that her child was not quite 'right '.
The description you give of your child fits hers very well, she was quite emotional when l showed her your post.
I see from another thread on this subject that your child is younger than my grandson. He has masked it very well and as he seems to be coping she has not mentioned it to outsiders, but has always had a concern.
She would be most interested to know how your child was diagnosed? It is so subtle, he can appear cooperative and fine and then, as you say, the mask slips. How do professionals get past this??

Thanks @Frankley - we actually got him diagnosed quite by accident. He was receiving speech therapy for a persistent stammer, and he was having some difficulties with his teacher in year R. I was constantly battling his teacher doing perplexing things, like punishing him for an emotional response (example: he wouldn’t have a drink because he couldn’t find his water bottle and didn’t want to use a school cup). It was very easy to move sideways from speech therapy into autism assessment (partly because of some of the ways he was disrupting those sessions), so I agreed. In part to stick two fingers up at the teacher, who was making his life really difficult and in part for my own peace of mind. It was a huge shock for me when the assessment was positive, but as he’s grown it’s become more and more obvious. His behaviour is driven by anxiety (my opinion) and he seems to have a really heightened fight or flight reflex. He will fight with me over anything, and when he’s in that mood he’s basically not there. He will also do silly things like run into the road to get away from a dog (that is on a lead and nowhere near him).

I’m in the process of engaging a private psychologist, at my own cost, to work on some things. In the absence of an NHS pathway open (or to save time) I would consider that as an option. For my child there is just something about him that experts at working with autistic kids can see. And tbf, I can now see certain things in other children as I’m so used to being attentive to my own child’s triggers.

Mental health issues are a separate diagnosis. There are a group of conditions that have recently been included in the autism dx which were previously separate.

Having a separate dx for those who are more impacted in every way all the time could be "severe autism" and others "autism" however there does need to be a way to distinguish.

Sorry my post was in reply to @Barn0w1

My son can speak and use a toilet so thats not severe so is he mild, is it aspergers?

My son has extremely limited functional speech.

He can take care of all of his toileting needs though as well as his personal care such as showering. He’s actually as clean and presentable as his siblings. He also likes a nice cologne to wear.

We couldn’t however let him out of the garden gate alone and my house is like Fort Knox with a very discreet security system in order not to give him a complex. He could get as far as the garden gate though but he’d never get onto the other side of it.

He also needs 2-1 round the clock care with a third person always there or there aboot as we say I’m Scotland.

He doesn’t have Asperger Syndrome.

I disagree. I don’t think a separate label would be helpful and almost impossible to firm a cut off.

And are we just going to disregard anxiety and meet downs in autism?🤔

The list of mental health problems that autistic people are at a higher risk from is horrific.

Women and girls can often mask so are more likely to be pushed off any cut off and a diagnosis can be hugely helpful. My dd probably wouldn’t have been hospitalised so many times if we’d known.

Also there are so many traits. Do you make the cut off if you struggle severely in one or two as opposed to somebody middling on several?

Higher risk from but not part of autism so yes it is disregarded as it is separate to autism. Dyspraxia and adhd are also common in people with autism but they too are not part of an autism dx and are stand alone.

Mental health issues are not part of autism, not all people with autism have mental health needs and they should not be confused.

No but the two difficulties necessary for a diagnosis will vary in how they present and impact life. Mental health can be catastrophic and autism is not a learning difficulty either.

"Mental health issues are not part of autism, not all people with autism have mental health needs and they should not be confused."

They are part of DD1 and DD2's ASD. They both have anxiety that is driven by their autism and the resultant difficulties in social interaction. DD1 is medicated because the outward manifestation of her difficulties was extreme weight loss. While she was in hospital she was referred to the eating disorders psychiatrist, who fortunately saw how badly she was doing.

For DD2, I can't get her past the gatekeeping of the CAMHS system. One reason is that I haven't done the Barnardo's Cygnet Course So I'm doing that course, and then I'll be able to add 'I have done the Barnardo's Cygnet Course' to her referral form. I've been a SN parent for 16 years, but somehow, doing a course that points me to 'Welcome to Holland' as an inspirational and healing poem means that DD2 will qualify for the help she needs.