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I am an "autism expert". Ask me anything.

554 replies

AutismProf · 18/05/2023 21:18

Worked in autism assessment, diagnosis and intervention on the education side for 20+ years. Ask me anything.

However, please note that I cannot personally do anything about waiting lists for diagnosis, or the education system, and I won't be blamed for these!

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SusiePevensie · 24/05/2023 20:01

I think my question might have been missed - halfway down page 8 - about how to help kids structure writing.

In the meantime everything you've said about processing speed has been really eye-opening and makes so much sense. Thank you and thank you for the thread - shoe in for classics I reckon.

So, rephrased question. What can I, what can anyone, do to help an autistic kid navigate the way they are being asked to write in schools?

StraightOuttaContext · 24/05/2023 19:49

Really interesting about different types of examination questions. I excelled in essay subjects, so I was sceptical, but I've thought about it this evening and I remember my teachers spending ages teaching us how to read the questions, break them down and structure our answers accordingly. That went for GCSEs and A Levels. I didn't get that at uni and i think the ambiguity had a massive impact on how much I struggled.

Morganchristie · 24/05/2023 19:35

My DD is 10 and is autistic and has adhd. She’s also non verbal. We have real issues with her not understanding she can’t always have what she wants. In school, upon leaving for the day she wants to go in lots of classrooms and take various toys (never the same and it’s always random). She has a bag of toys from home that she takes to school each day but won’t leave without trying to take something from school. School struggle because if she can’t have it, she gets into a state and then they’ve got to get her on transport. None of us is sure what to do.

AutismProf · 24/05/2023 19:34

Freezylap · 24/05/2023 19:26

China still has a very knowledge based education system. Do you think autistic children are likely to be thriving there?

Knowledge based systems become incredibly pressured because it is possible to cram and work and get 100% on a test. A system like ours which relies more on thinking skills reduces the need for this as understanding is more valued than remembering, and it’s not really possible to get every question ‘correct’ as there’s always a deeper level of thinking that’s possible (unless you’re an Oxford professor or something!)

Yes and that is what causes the anxiety inhibition of writing in so many autistic students - not every autistic student, but those who "refuse" long answer questions /find handling ambiguity or inferring what response the examiner is looking for tricky. I don't think you could have scored 100 percent in those 1959 history questions either, but at least you would have known exactly what the examiner wanted as their response.

A goodly proportion of autistic students do have excellent memory and knowledge skills. These are the toddlers who reel off the names of every single dinosaur, and the 10 year olds who know every Pokémon, its prevolution and evolution.

The fact is, there's a mental health crisis in autistic kids in education. Part of that is social media/ online world based. Part is lockdown based. But we were already seeing the tendrils back 6 or 7 years ago and I believe part of it is that educators don't tend to understand why some autistic kids struggle with writing subjects (and call it slow processing).

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Righthandman · 24/05/2023 19:31

Freezylap · 24/05/2023 19:07

Yes exactly this. Don’t romanticise the past. For every autistic male who was able to hide away from life in his study there was wife sacrificing her own needs to keep him contented because she had no other choices.

How did autistic women cope in history? There was no outlet for them.

I think there were outlets for autistic women. Maybe not as nice as for (some of) the men but still… Some might have taken to the religious life, as did men. Some might have been writers. Some might have been extremely diligent and organised scullery maids or governesses which might not sound fantastic to modern ears but would have represented security and a degree of independence…

Freezylap · 24/05/2023 19:26

China still has a very knowledge based education system. Do you think autistic children are likely to be thriving there?

Knowledge based systems become incredibly pressured because it is possible to cram and work and get 100% on a test. A system like ours which relies more on thinking skills reduces the need for this as understanding is more valued than remembering, and it’s not really possible to get every question ‘correct’ as there’s always a deeper level of thinking that’s possible (unless you’re an Oxford professor or something!)

Freezylap · 24/05/2023 19:07

StraightOuttaContext · 24/05/2023 18:44

@AutismProf I can't speak for @Freezylap but I read it as a condemnation of patriarchy and a critique of the invisibility of women throughout history, even tho they were instrumental in facilitating an environment in which their spouses might flourish. Just my take.

Yes exactly this. Don’t romanticise the past. For every autistic male who was able to hide away from life in his study there was wife sacrificing her own needs to keep him contented because she had no other choices.

How did autistic women cope in history? There was no outlet for them.

AutismProf · 24/05/2023 19:00

Sorry, images are poor quality. Trying again.

I am an "autism expert". Ask me anything.
I am an "autism expert". Ask me anything.
I am an "autism expert". Ask me anything.
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AutismProf · 24/05/2023 18:55

Re education.
This is what I mean by knowledge based. These questions are from a 1959 O level history paper; the second from a modern GCSE history paper. See how the first paper is testing knowledge? "Describe, explain, what is" questions.
The modern paper has a completely different approach which places way more emphasis on using historical analysis methods, requiring inference and deduction, and questions which require the person to use their acquired knowledge and focus their answer on perspective taking, opinion etc. Way more complex in terms of higher order thinking skills.

I am an "autism expert". Ask me anything.
I am an "autism expert". Ask me anything.
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StraightOuttaContext · 24/05/2023 18:45

And that women per se rightly expect more from life now.

StraightOuttaContext · 24/05/2023 18:44

@AutismProf I can't speak for @Freezylap but I read it as a condemnation of patriarchy and a critique of the invisibility of women throughout history, even tho they were instrumental in facilitating an environment in which their spouses might flourish. Just my take.

AutismProf · 24/05/2023 18:37

Freezylap · 24/05/2023 18:21

You make the point that modern life is more disabling for people with ASD than life in the past may have been.

It’s impossible to know of this is true. There were no accommodations made in education so the idea that an autistic person could become a quiet genius will only ever have been true for a small minority who were able to function pretty well anyway.

And these men of the type you’re envisioning were always enabled by women who now want more from marriage than regular housekeeping and cooking 5 dinners a week on a predictable rotation.

I do know the sensory world and the communication expectations (phone, social media, emails, WhatsApp, Snapchat etc etc) are much much higher nowadays.

It's true there were no accommodations in education, but then only a tiny minority were educated beyond age 16 and the curriculum was by and large more knowledge heavy. I am not suggesting that all autistic people had it easy back then; but I do believe the modern world makes it even harder for some.

I am not sure what your third paragraph is trying to say? Are you agreeing that it's harder to be an autistic male spouse nowadays, as there are different expectations on men in general? Or feeling angry with women from prior generations in some way?

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ButterflyBitch · 24/05/2023 18:34

Phineyj · 24/05/2023 18:24

Regarding the hot showers, a plumber can fit a limiter valve to cap the temp at a certain level. We have one.

Thank you. I didn’t know that.

ButterflyBitch · 24/05/2023 18:33

AutismProf · 24/05/2023 18:10

Turn down the thermostat so the water is never piping hot? Put a label on the wall saying "here and no higher" at number 7?

He’d ignore the label but thermostat is a good shout.

Phineyj · 24/05/2023 18:24

Regarding the hot showers, a plumber can fit a limiter valve to cap the temp at a certain level. We have one.

Freezylap · 24/05/2023 18:21

You make the point that modern life is more disabling for people with ASD than life in the past may have been.

It’s impossible to know of this is true. There were no accommodations made in education so the idea that an autistic person could become a quiet genius will only ever have been true for a small minority who were able to function pretty well anyway.

And these men of the type you’re envisioning were always enabled by women who now want more from marriage than regular housekeeping and cooking 5 dinners a week on a predictable rotation.

AutismProf · 24/05/2023 18:10

ButterflyBitch · 24/05/2023 17:25

I know this thread is about autism but can I just ask you a question about sensory problems? My son is diagnosed with dyspraxia/dcd and also has quite a few sensory needs/issues with noise, touch and also needs to make a noise quite a lot. The one thing that concerns me is that he has really really hot showers and doesn’t seem to realise he could scald himself. His skin is bright red when he comes out and it’s always on the highest setting when I check it after. I’ve asked him not to have it so hot but it’s still so hot that there’s no way I could even touch the water let alone shower in it. I know he hasn’t burnt himself so far but it can’t be good for him to have them so hot. I can’t work out what he could do to fulfil this sensory need without being as risky. Sorry to jump on thread, I just wondered as you seem quite knowledgeable about the sensory side of things. Thank you!

Turn down the thermostat so the water is never piping hot? Put a label on the wall saying "here and no higher" at number 7?

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Firstshoes · 24/05/2023 17:47

AutismProf · 24/05/2023 17:06

Sorry, didn't link the right page - should be:
https://www.spectrumgaming.net/volunteer

Wow. All such amazing advice. Thank you so much for taking the time to respond with this. I had no idea of anything really so this is really helpful. I will read through and research everything properly when I am home later. I really appreciate this

ButterflyBitch · 24/05/2023 17:25

I know this thread is about autism but can I just ask you a question about sensory problems? My son is diagnosed with dyspraxia/dcd and also has quite a few sensory needs/issues with noise, touch and also needs to make a noise quite a lot. The one thing that concerns me is that he has really really hot showers and doesn’t seem to realise he could scald himself. His skin is bright red when he comes out and it’s always on the highest setting when I check it after. I’ve asked him not to have it so hot but it’s still so hot that there’s no way I could even touch the water let alone shower in it. I know he hasn’t burnt himself so far but it can’t be good for him to have them so hot. I can’t work out what he could do to fulfil this sensory need without being as risky. Sorry to jump on thread, I just wondered as you seem quite knowledgeable about the sensory side of things. Thank you!

AutismProf · 24/05/2023 17:06

Sorry, didn't link the right page - should be:
https://www.spectrumgaming.net/volunteer

Volunteer with us | Spectrum Gaming

https://www.spectrumgaming.net/volunteer

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AutismProf · 24/05/2023 17:03

Firstshoes · 19/05/2023 07:25

Hi AutismProf, my dd is 20 now. Has an Aspergers diagnosis. Suffers with confidence and anxiety so does not go out on her own. Went through the whole of school and 6th form and got all her GCSEs and 3 A levels but always felt an outsider and made no friends. She is VERY young for her age and games all the time. Only friends she has are online gaming friends. What can she do now? She has no confidence to get a job at the moment. She is so very quiet and nervous. She did attend a couple of interviews but heard nothing back. Are there any schemes/support groups you know of that can help her with confidence/life skills. She had an awful experience with Prince's Trust so not them! I am so very scared for her future. 😢

Answering this one having skipped a few that are similar to others or really complex and I need thinking time to answer. I will come back to those I skipped.

Does she get pip? Has she been put in the support group for Univ credit? If so she should qualify for limited capacity for work, or even limited capacity for work related activities - this latter means a higher univ credit amount each month. You can also apply for an adult social care assessment, since she is an adult unable to live independently. She might well be entitled to some PA time. My daughter has a PA 4 hours a week who takes her food shopping, helps her make important calls, that sort of thing (she lives in her own home).

She would count as NEET (not in employment, education or training) and councils are judged on their NEET population and so she should be a priority for support. I assume she doesn't have an EHCP? If not, you can apply for one, but would need her consent and signature. An ehcp would then open the door to things like 'supported internships', which are year long college and work placements. More local authorities are opening supported internships that are computer focused. They may also have a specialist college she could attend. At the very least, they should provide specialist careers advice from their specialist team.

She could also put in an application to volunteer with Spectrum Gaming. It's an all autistic charitable enterprise, it provides online gaming platforms for autistic children with a hefty side order of positive autism role models, neuroaffirmative practice etc. They train their volunteers to do things like play games with children who are lonely, sort out arguments etc. The volunteers can do as much or as little as they can manage. All employees are autistic or in a small minority of cases, very autistic-friendly.

www.spectrumgaming.net/join-our-team

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NanFlanders · 24/05/2023 09:52

@AutismProf Thanks very much for your advice. I've really been getting a lot out of the thread. Really appreciate you sharing your expertise.

AutismProf · 24/05/2023 09:41

NanFlanders · 19/05/2023 00:34

DD (17) is seriously I'll with anorexia (8 times hospitalised in a year and now an inpatient in a specialist unit). She's now been referred to the ASD pathway - I understand a really high proportion of anorexic girls are autistic. The question is, how can/should we adapt our care for her so she is less distressed, in the hope that making life easier for her will mean she is less likely to starve/restrict as a coping mechanism? Thanks for any advice you can give.

Nan, this sounds awful, I am so sorry.

I am really not an expert in eating disorders and would always advise speaking with your daughter's medical team first and foremost.

What appears to distress your child? Reduce it; cut it out completely if you can, for now, while she is so poorly. Focus on things that give her respite, pleasure and calm. There will be time later to begin to move forward again in tiny steps; for now, she needs to get better as the top priority. That's more important than school, exams, uni, work, independence, everything else really.

My son's burnout was different but at his lowest point I used to get him to play Super Smash Bros on the Switch with me. I can't play at all, I am rubbish, but it was a way of trying to step into his world and assure him of a connection. He used to quite enjoy playing and was very patient at teaching me; I think it helped him a tiny bit to see he was still competent in something and could still teach me. Healthy eating went out, and I would make complan milkshakes so I knew he was getting vitamins. He was completely assured that we couldn't care less about his A levels and that if he wanted to, he could think about them when he felt better. I am sure you are doing all this. The helplessness I felt dealing with severe burnout was so awful. I so empathise with you. Wishing you and DD all the best.

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AutismProf · 24/05/2023 09:28

@crabbyoldappletree
Second part of your question - yes, absolutely, though we are getting better. It's very typical that kids (esp girls and others who internalised their anxiety) are not referred for autism assessment until they burnout and enter EBSA.

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AutismProf · 24/05/2023 09:26

crabbyoldappletree · 19/05/2023 00:26

Have you looked at the year 6 SATs reading test OP? I only ask, because having just read all three texts and then looked at the questions, there are a number of questions which rely on inferencing.
To me this sums up just how categorically wrong are educational system is for anyone who is ND. I guess my question is, do you think we'll ever get to the point where education stops being so bloody narrow?
Also you say you think it's as many as 1 in 30 children are autistic, but in the US the figures are higher. Do you think we're still missing a number of the 'quietly autistic' kids ie because there is no behaviour issue they don't get picked up? They are just left to struggle, until it reaches crisis point in late teens or into adulthood when the masking can no longer be sustained.

The emphasis on inferencing - and for older youngsters, on application rather than knowledge based questioning - is very conscious. It's designed to tap into and assess what are termed "higher order" thinking skills. However these higher order skills of application and inference are often lagging in autistic learners, who understand the knowledge component and can recall and explain it perfectly. This is one source of educational stress in autism - a sort of mismatch between one's thinking style and the questions presented which means that our autistic kids often can't demonstrate their understanding. This causes cognitive dissonance in the child - they don't understand why they can't do it - and draws negative feedback from adults around them, who know they "know the information" and therefore interpret the failure to 'produce the goods' as motivation-based (lazy) or as processing speed if you are lucky (but just giving more time doesn't solve the problem). This is what triggers the intense slow burning cumulative anxiety that many kids begin to carry in school. Nobody explains that it's not that they have become stupid, it's that the curriculum is no longer in synch with their brain strengths. These types of questions trigger perfomance deficit. It's very sad.

I don't necessarily think there should never be any questions of this type, but I do think there should be more opportunities in exams for youngsters to demonstrate their knowledge in a wider range of ways, with the options for recall and descriptive questions in some longer marker questions, as well as all the application and inference stuff. Plus I think autistic kids and their teachers should have better explanations about why some questions are tricky to ND brains. This would then dispel some of the negative feedback and sad bewilderment of the middle school years for some autistic youngsters.

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