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

[AutismProf]

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!

No other autistic person speaks for me, or on my behalf unless I personally ask them to on a situation-by-situation basis. I am more than comfortable with how the OP describes herself and writes about autism, and am glad people like her work in 'the system'.

There is a long and unfortunate history of non-autistics presuming to speak for & over autistic people, so let's not do it to each other. On the flip side, I do think it is important that those of use who have the cognitive/linguistic/etc ability, try to support those allistic people who do need to speak for their autistic loved ones/clients/patients who are unable to advocate for themselves.

Sorry, OP, I couldn't resist giving my two penn'orth...

Hi OP. You're kind to answer all these questions. I've enjoyed your humane responses.

I hope you get to mine eventually - I'm out of my depth with this EHCP thing and (alarmingly!) I'd say my local authority are too...

We are many but we are still a minority. We don't need you to be an expert and proclaim yourself as such.

Just to say that in dismissing the OP's obvious expertise, you don't speak for me, so stop announcing what "we" need. I am autistic and really value this thread. Thank you, OP, please keep going.

Other people with social communication differences or other ND conditions in the family is common, as is having people with "subclinical" features, If you look at the autism wheel above, features only in one or two aspects. So whilst 2 of mine are autistic, another is quirky but doesn't seem to have the flexible thinking features or the levels of anxiety. I also have a highly creative child who is more inattentive ADD type. Only one of my kids appears NT.

There are autistic children where there are no other autistic people in the family; in my experience these are commonly classically autistic children where the autism is linked to a genetic condition or alteration (like a deletion on chromosome 9, or fragile X or some such) or where there was a brain injury around birth (eg very prem, severe meningitis in babyhood etc). Please note, not all very prem babies/ babies who have birth injuries or serious illness in the first year of life will turn out to be autistic. It's just increases the odds. The autism without learning difficulties type of autism seems quite strongly inherited with features in families, whereas classical autism is sometimes familial and sometimes spontaneous.

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.

@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.

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.

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

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

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

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!

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

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?

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.

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

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

Thank you. I didn’t know that.

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?

@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.

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

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.

Sorry, images are poor quality. Trying again.

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.

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!)

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…