To ask questions about autism.

[coodawoodashooda]

About 10 years ago i was in a meeting about autism. The leader said something like, 'if the child could......... then they didnt have autism. What was the quality that was being referred to? Was it empathy? I cant remember and for various personal reasons id really like to know.

ABA changed my DS from a continually self-harming, unable to communicate, constantly stimming and screaming and completely non-social child into a highly communicative, non-self harming, very social child who has a very full and happy life. He skiis, swims, cycles, waterskiis, rides horses etc. None of that would be possible without the years of ABA. I am not here to bang on about it, got over that years ago, but I still find it sad that the most effective therapy for those behaviours is not used by people because of an outdated and clinically inaccurate way of thinking.

@theDudesmummy

ABA changed my DS from a continually self-harming, unable to communicate, constantly stimming and screaming and completely non-social child into a highly communicative, non-self harming, very social child who has a very full and happy life. He skiis, swims, cycles, waterskiis, rides horses etc. None of that would be possible without the years of ABA. I am not here to bang on about it, got over that years ago, but I still find it sad that the most effective therapy for those behaviours is not used by people because of an outdated and clinically inaccurate way of thinking.

Equally my DS who is exactly as you describe at the start turned into a happy and well adjusted adult who copes with life and enjoys lots of things too. He didn't have ABA.

That may well be the case, and I'm glad you too had a good outcome. I do still firmly believe that mine would not have been able to get to where he is today without ABA. And everyone should do what they believe best for their own child, with all the information they can garner. I don't have a problem with people who decide not to use ABA. I do have a huge problem with people demonising it and accusing me of torturing or abusing my child, when what I have done is enable him to live in our society and become a full partcipant in it.

I now live in a country where ABA is a much more integral part of the philosophy of all disablity services than it is in England, and it is a very good thing.

I don't have a problem with people who decide not to use ABA. I do have a huge problem with people demonising it and accusing me of torturing or abusing my child, when what I have done is enable him to live in our society and become a full partcipant in it.

You changed your child to suit society. That says it all to me. Im not here to fight though. It's hard enough without that so i shall just leave it at that. An ABA scrap is t worth anyone's time.

I think we can all agree that it would be better if the world was an easier, more accepting place for autistic people.

I can't blame anyone for trying to help their kids to adapt to it or do better.

I am also guessing that if you're the kind of person who joins mumsnet, you're probably quite caring and analytical and looking for the best way of parenting. So mums here are probably usually attuned to whether ABA is helping their kids or stressing them out.

So many things that get trotted out, wrongly, about autism.

There is a spectrum, an autistic spectrum, on which people with autism sit. You can’t be ‘a bit on the spectrum’. HOWEVER. I do think that there are many people, who are now adults, who weren’t diagnosed as children, who are have autism. They just haven’t been diagnosed, would be on the ‘milder’ end of the spectrum, if they had been diagnosed, and have learnt to mask well.

Some of the most ridiculous misconceptions of people with autism/possible autism I’ve come across:

X loves lining up his trains, could he be autistic? (No, he just likes things to be organised)
Are you sure X has autism, he has great eye contact and lots of friends?
You’re so (insert word here) to have an autistic child, they must be really good at (insert word here)

I am not the parent of a child with autism, but I have lots of experience in working with children with autism, and some of the things people come out with are awful, and mis informed.

@hopingforabrighterfuture2021

So many things that get trotted out, wrongly, about autism.

There is a spectrum, an autistic spectrum, on which people with autism sit. You can’t be ‘a bit on the spectrum’. HOWEVER. I do think that there are many people, who are now adults, who weren’t diagnosed as children, who are have autism. They just haven’t been diagnosed, would be on the ‘milder’ end of the spectrum, if they had been diagnosed, and have learnt to mask well.

Some of the most ridiculous misconceptions of people with autism/possible autism I’ve come across:

X loves lining up his trains, could he be autistic? (No, he just likes things to be organised)
Are you sure X has autism, he has great eye contact and lots of friends?
You’re so (insert word here) to have an autistic child, they must be really good at (insert word here)

I am not the parent of a child with autism, but I have lots of experience in working with children with autism, and some of the things people come out with are awful, and mis informed.

And speaking of things getting trotted out..

The autism spectrum isn't somewhere people sit. None of us have been placed there in an order decided by others. It refers to the individual person, not where we line up against others.

You are all being brilliantly helpful. I have more questions but i will read all of your responses first.

Thinking about this I was wondering if your ds has a formal diagnosis of PTSD?

You are quite right that DA can have a significant impact of the functioning of dc.
Some areas run excellent programs for dc who have been part of a domestically abusive household.

While I would encourage assessment for autism as suggested by the school because I believe diagnosis of issues is helpful I wouldn't underestimate the potential for issues that are trauma based.

I would certainly ask for an assessment which covered this as well.

When my dc had their complete educational assessment it included a trauma assessment, TSCC in his case, to assess this possibility.

Okay. Me next question is how would an assessment successfully distinguish between learned copied behaviour and his own actual skills, if you see what i mean?

I didn't "change my child to suit society". I parented him so that he could live successfully in the society in which we live. As do we all. You did the same when you toilet trained your child, taught him to wear clothing in public, to communicate with language, to bath or shower, to have manners, to eat with cutlery and a million other things that children have to learn in our "society". If I had left my child without the changes (as you put it) he needed, he would be: non-communicative, brain-damaged from head-banging, unable to go into public places so completely isolated. Yes, I had to change those aspects of his behaviour. Not to "suit society", but for him to be able to live any kind of life. ABA did that for him.

Ds changed massively too…but we didn’t do ABA.

Okay. Me next question is how would an assessment successfully distinguish between learned copied behaviour and his own actual skills, if you see what i mean?

Can you give a few similar, not actual examples, please?

Things like sensory stuff, loud noises, labels and seams in clothes are an of the moment instinctive reaction.
You can be told and taught that seams in clothes irritate, but I'd doubt you'd fake it or use learned behaviour in that instance because you'd not be irritated at that moment, whereas someone with SPD wouldn't be able to settle or concentrate on anything else until the irritant was removed.

The assessments are structured to remove doubt, the fun things they'll give a child to do are tailor-made to show the professionals how that child will process that information, if they will respond like an NT person to questions, or a neurodiverse one.

Some of it is age-appropriate stuff like sorting shapes, read a story and answer questions about it, observation about how they follow directions or instructions, all sorts of things that show instinctive reactions. Things that you'd never notice, but which are designed to give the medics doing the assessments a clear indication of neurodiversity (or not).

I can't think of a specific thing that means a child is definitely not autistic. When we went to the one and only parent support meeting our local health authority offered parents of newly diagnosed autistic children, DS was the only one who didn't have tantrums. He fugued instead which is rarer but an equivalent trait. He was rigid and hated hugs as a baby but is now the best hugger I know. He is extremely empathetic - way more than anyone else I know. To a fault, really, in that he can't understand why everyone else isn't as empathetic as him and struggles with the casually unsympathetic nature of most neurotypical people.

@coodawoodashooda

Okay. Me next question is how would an assessment successfully distinguish between learned copied behaviour and his own actual skills, if you see what i mean?

E.g. Eye contact: I taught DD2 eye contact by rote. But the assessor said he could see that she was looking at him obliquely - she was looking just enough in the right direction to seem like she was looking 'at' him, but it wasn't true reciprocal eye contact.

One of the things that the assessor picked up was that DD2 used a particular, unusual, word, 3 times in the same story retelling. Each time it was just ever so slightly out of context. That made her think that DD2 had learned the word and inserted it, rather than using it naturally as part of her vocabulary.

DD2 was great at answering factual questions. Her difficulties were revealed when she was asked more abstract questions about emotions, relationships, etc.

She was asked if she was going to get married. She said 'No I'll live with my husky dogs'. They asked 'why?' and she said 'dogs don't have a huge list of demands liked humans do.'

I can't think of a specific thing that means a child is definitely not autistic.

Not meeting the diagnostic criteria.

When we went to the one and only parent support meeting our local health authority offered parents of newly diagnosed autistic children, DS was the only one who didn't have tantrums. He fugued instead which is rarer but an equivalent trait. He was rigid and hated hugs as a baby but is now the best hugger I know. He is extremely empathetic - way more than anyone else I know. To a fault, really, in that he can't understand why everyone else isn't as empathetic as him and struggles with the casually unsympathetic nature of most neurotypical people.

Empathy and meltdowns, not tantrums, are relevant but also not necessary or enough to to meet criteria for diagnosis.

Off the top of my head... He often appears to be in a world of his own. Hes not at all self conscious when getting changed (hes recently turned 9), hes often got a mucky face after eating (hes not being naughty).

Autism is diagnosed when someone has significant difficulties in three areas:
Social communication, social interaction, and repetitive or restrictive behaviour.

Social communication relates to understanding intention, so not interpreting tone of voice, not understanding sarcasm, taking things literally, needing time to process information, etc.

Social interaction relates to building relationships and understanding the 'rules' of interaction, so behaving 'strangely', finding friendships difficult to form or maintain, not reading cues from other people, etc.

Restrictive/repetitive behaviours can be repeated non purposeful activity (e.g. rocking/flapping/humming) or routines that serve to calm someone, rather than being necessary. For example, DD2 will put things in her bag so that it 'feels right' - it doesn't matter that she doesn't need the things in her bag. DD1 will say stock phrases to calm herself, such as 'not now, later'.

Being in a world of his own could be being slightly inattentive, or it could be a feature of ASD. Can you draw him back to you? What is he doing when he is in his own world?

The lack of inhibition, I think, is quite normal. DD3 (NT) had no inhibition until about 6 months ago and she's 12.

The mucky face can be a sensory issue or fine motor issue.

I disagree: the third 'leg' of the triad is social imagination not repetitive or restrictive behaviour. The latter is often a symptom but not a diagnostic criterion.

The lack of inhibition, I think, is quite normal. DD3 (NT) had no inhibition until about 6 months ago and she's 12.

It's actually on my diagnostic report, that I didn't naturally develop a sense of modesty under the criteria for lack of socio-emotional reciprocity as shown by impairment or deviant response to others emotions.

Actually, you're right, @AlfonsoTheMango. I got carried away.

AlfonsoTheMango the truism of impairment is no longer used to diagnose and DSM5 states ‘repetitive and restrictive pattern of interests or behaviour’

Triad of impairment, bloody autocorrect

I an CERTAIN the repetitive conversation is to secure his father's attention and stay in his good books. The uninhibited behaviour regards to privacy with his body is inconsistent. He would be aware in the living room if someone came round but early morning on an empty beach yesterday it didn't cross his mind. He despises writing and, 'the world of his own.' I wonder if thats to do with being ignored for extended periods of time when hes away.