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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask questions about autism.

282 replies

coodawoodashooda · 09/07/2021 19:06

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.

OP posts:
coodawoodashooda · 10/07/2021 22:31

Whats ABA?

OP posts:
Aspinelli · 10/07/2021 22:36

@coodawoodashooda

Youve all been amazingly helpful. Thank you. So is it the process of the diagnosis that provides the clarity that gives so much comfort, or is it the support afterwards? Remember, im thinking out loud, not trying to upset anyone.
I was diagnosed as a child, so had support through education and allowences and as an adult the clarity has really helped me be more forgiving to myself.
Nayday · 10/07/2021 22:40

Applied behavioural analysis - contraversial 'therapy' where kid is taught to be NT through drills and repetition. Stimming etc is stopped. Many autistic people see it as abusive and on a.par with homosexual conversion therapy.

Nayday · 10/07/2021 22:47

Different perspectives on the diagnosis label VA support, for me as a parent it's the support I'll be able to fight to get (as opposed to closed door) and give my child a chance at thriving.. autistic kids are massively prone to low self esteem and it makes sense - you're different, find things harder and no idea why. As an adult it's probably less the support and more the a-ha! I can relate to that, I'm not diagnosed but most of the boxes I'm ticking for my son apply to me which has made me a bit 'ohhhh'. I won't pursue diagnosis unless the opportunity drops in my lap but it has made a few things make sense in a very comforting way...

WithANameLikeDaniCalifornia · 10/07/2021 22:50

Autistic people mostly don't like using functioning labels such as lower/higher and the now not diagnosed Asperger's

How many autistic people did you survey?

(Btw some autistic people prefer “person with autism” over “autistic person” if you’re so keen to be inclusive)

Radio4ordie · 10/07/2021 23:02

@Nayday

Applied behavioural analysis - contraversial 'therapy' where kid is taught to be NT through drills and repetition. Stimming etc is stopped. Many autistic people see it as abusive and on a.par with homosexual conversion therapy.
Many non autistic people also view it as abusive. Awful, awful treatment of people. Should be banned. What’s even more terrible is that it plays on the vulnerability of parents who think they are helping their child when they are complicit in the abuse and often funding it at great expense.
RaspberrySchnapps · 10/07/2021 23:04

for my DS it was the process, Because he already knew, but it was an intensely private thing that took all his energy to hide from everyone but me and DH. Talking to the HCPs during the assessment was a revelation.

The thing I didn't expect about the various bits of assessment is that they can be quite enjoyable for DC. Try not to fear them OP, I did and I was wrong, its not the Spanish Inquisition. Mine loved the Ed Psych battery of tests, especially as it got him out of a games lesson. Occupational Therapy also was particularly good, she understood him and that was a huge deal for him.

With appropriate support in place DS is still himself, just much calmer from not putting so much energy into masking and coping. He used to let rip at home to decompress after masking all day at school, now he doesn't do that at all really.

coodawoodashooda · 10/07/2021 23:06

Nayday

Thank you. I can see why.

OP posts:
RaspberrySchnapps · 10/07/2021 23:09

@Aspinelli clarity! that's it, that's what DS has and its made all the difference.

lakesummer · 10/07/2021 23:09

For my diagnosis (not autism) I would say that the most important part was the emotional impact, understanding I wasn't stupid or lazy just had a different brain. So the clarity was the key part.

The diagnosis meant it was much easier to achieve my full potential academically, from a terrible start I ended up doing well and have several degrees and professional qualifications.

I see the same pattern play out with my ds and his different diagnosis, the key is the personal peace it brings.

But proper support at school does help both with academics and importantly teacher relations.

JulesRimetStillGleaming · 10/07/2021 23:15

My favourite autism Facebook group is 'when you're tired of autistic people but you are an autistic people'. It pokes fun at some of the more extreme views espoused by the 'autistic community'. Anyway, there are autistic people who post there about how they benefited from ABA and autistic practitioners of ABA post about what it actually entails and how respectfully they use it. ABA can be horrific and abusive but that's not to say that all practitioners are abusive or that it can't be beneficial for some.

I don't have a view either way as I have no personal experience but read some autistic social media and you're pretty much told what to think about certain things. I prefer to make up my own mind.

toastantea · 10/07/2021 23:23

Anyway, there are autistic people who post there about how they benefited from ABA and autistic practitioners of ABA post about what it actually entails and how respectfully they use it. ABA can be horrific and abusive but that's not to say that all practitioners are abusive or that it can't be beneficial for some.

I just had a look. More American stuff.

The ABA, of course the 'practitioners' are going to say they use it respectfully. Of course the autistic people are going to say they benefited from it. They are programmed to do that. You cannot therapy the autism away though. ABA can be horrific and abusive because it is horrific and abusive. Trying to train a person out of their very most natural behaviour to suit others Confused

RickiTarr · 10/07/2021 23:24

Thanks @JulesRimetStillGleaming - I think I need that group.

JulesRimetStillGleaming · 10/07/2021 23:30

@toastantea

Anyway, there are autistic people who post there about how they benefited from ABA and autistic practitioners of ABA post about what it actually entails and how respectfully they use it. ABA can be horrific and abusive but that's not to say that all practitioners are abusive or that it can't be beneficial for some.

I just had a look. More American stuff.

The ABA, of course the 'practitioners' are going to say they use it respectfully. Of course the autistic people are going to say they benefited from it. They are programmed to do that. You cannot therapy the autism away though. ABA can be horrific and abusive because it is horrific and abusive. Trying to train a person out of their very most natural behaviour to suit others Confused

Ok. Don't dismiss an international group full of autistic people as 'more American stuff' unless you have personal experiences of it...

I rather rest my case.

toastantea · 10/07/2021 23:31

Ok. Don't dismiss an international group full of autistic people as 'more American stuff' unless you have personal experiences of it...

I looked and that is what I saw.

UndertheCedartree · 10/07/2021 23:37

Could it be imagination? This isn't true autistic people can have a good imagination but struggle with social imagination.

aquashiv · 10/07/2021 23:45

That trainer was wrong.

PopLife · 10/07/2021 23:52

This is a very enlightening thread. Thank you all for sharing your experiences. Has anyone been diagnosed as an adult and can explain what an assessment involves please? Do you have to have lots of proof of what you were like as a child?

UndertheCedartree · 11/07/2021 00:07

@x2boys - the autistic spectrum refers to the fact people have different strengths and weaknesses in a number of areas - it is not about some being less affected than others.

PopLife · 11/07/2021 07:39

Thank you @BlankTimes

coodawoodashooda · 11/07/2021 07:42

Yes, thank you.

OP posts:
Lougle · 11/07/2021 08:33

@coodawoodashooda

Youve all been amazingly helpful. Thank you. So is it the process of the diagnosis that provides the clarity that gives so much comfort, or is it the support afterwards? Remember, im thinking out loud, not trying to upset anyone.
I think the process of assessment can be very affirming. For example, early on in the screening process (the bit where they decide if full assessment is warranted) when my DD was asked 'What would you do if a child you didn't know came into the playground and wanted to play?' she responded 'Well that isn't happening!' the assessor laughed and said that he needed to write that down. Most people would have seen her as rude, or exclusionary. He understood that she was expressing her discomfort at change.

The diagnostic process, for DD2, was the ADOS assessment and a parental interview called the 3Di. The 3Di was very reassuring, because you're asked lots and lots of questions, and your answers are put into the computer programme. At the end it collates the results into 4 domains (Social reciprocity, Communication, non-verbal communication, and restrictive/repetitive behaviours and interests) and gives a score for each. The report we got also gave the minimum score for clinical significance and the maximum score available. DD2 scored 24.2 for social reciprocity - the maximum score was 30 and the minimum score for clinical significance was 10, so we could see that she had 'qualified' by a long way.

For DD2, the fact that someone actually said to her 'you have autism' and explained that the autism means that she finds some social situations hard and that she needs extra help to understand the 'rules' of communication, was really helpful. Suddenly she understood why she finds it impossible to ask teachers for help, why she wants to be invisible in class, why she doesn't like change, why she still puts things in her bag so it feels the same weight on days when she doesn't need to take anything to school, why she's so drained after school, etc.

Also, it's helped because school are aware of her needs. They make sure she's sitting near the teacher, so she can ask for help discreetly and they can notice if she needs help. She has a '2 minute early' pass so she isn't so anxious when she's moving to the lunch hall/leaving school. She has a toilet pass so she can use the toilets during lessons. They've just done assessments for access arrangements. She's done too well to qualify for extra time, but they are going to give her a quiet room and rest breaks, so that if she gets flummoxed, she can turn her exam over and raise her hand, then the time will stop while she calms down and thinks, then she'll turn her paper back over and the timer will start again.

Many of her wider social circle don't know about her diagnosis. I think she has told her very close friends.

UndertheCedartree · 11/07/2021 10:14

Regarding PTSD - my autistic son was initially refereed to CAMHS as they wanted to rule out his autistic traits as being caused by trauma. So there is obviously some overlap here. I would therefore get your DS seen by CAMHS initially for assessment regarding PTSD and take it from there.

Percie · 11/07/2021 12:39

@coodawoodashooda

For those of you with an adult diagnosis, what do you feel better about since being diagnosed?
I was only diagnosed recently with Asperger's, but it has helped make sense of so much. One big example is patterns in clothing - in OK with repeating patterns but not with random ones, if I try to wear them, e.g., I've been given a top then I should wear it when I see the giver, I feel misshapen, physically uncomfortable and like I have a spotlight on me, it stops me concentrating on anything else. You couldn't tell because I hide it. Since the diagnosis I've got rid of all those clothes and it's removed a huge stress, I just hadn't connected the dots between the pattern and the feeling until the diagnostic process.

The other thing it has helped with is PTSD - I'm about to begin trauma therapy, apparently there's been some research that certain therapies won't help much if you're autistic, so I've been added to the waiting list for the more appropriate therapy.

It's very hard to explain how relieving it feels to make those connections and finally be able to do something about the feelings because you know why now.