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!

@PurpleBugz love the way you have put it. Luckily DS is an only child so using the approach of gauging the impact and adapting based on that sounds like something that would be good for me to start implementing.

@DuranNotSpandeau not autism specific, but I find How To Talk so (Little) Kids Can Listen and Listen so Kids Can Talk very useful in such situations.

@nidgey We discovered my daughter had challenges with this. For her it's down to having a slower processing speed. We pushed for extra time in exams. English was a particularly difficult subject for her.

Thank you so much - how have I not come across this before? This type of thing would have been perfect post diagnosis, instead you're just sent on your way with a letter and links to websites.

Better post diagnosis support could be life changing for so many people and in the long run save the NHS money.

And I forgot to ask - which health professional would normally do this type of work?

Thanks

What are thoughts on ASD becoming 'big business'? What are your thoughts on the explosion of 'experts' setting up private consultancies, charging ££££ to desperate parents to 'diagnose'.

What are your quals OP?

So they basically already have done that and it doesn't sound like you often need to get the clinical psychologist/psychiatrist/paediatrician (forgot the last one before) on the team. That's good, when my children and I were diagnosed you needed at least one of them to assess then have it agreed on by a SALT or another of the above, it did seem needless when there are others who could be trained.

my daughter is 3 and non-verbal and doesn’t follow instructions. She’s difficult to engage and is having speech therapy, but nothing is working. She’s got an EHCP and occupational therapy is due to start. What else can I do? Is there a miracle therapy? If s it worth trying supplements of some sort? Thanks.

More likely to be issues with flexible thinking, executive functioning, perception of risk and ambiguity than "just" processing speed. Will elucidate more later, just on a quick work break!

I'm not going to pretend to be an expert but my understanding is that if the assessment meets NICE guidelines is has to be accepted by the local authority and NHS. Not sure what that would mean in terms of funding for treatment.

The organisation we've found carries out an in-school observation rather than just a discussion with teachers. I think autism in girls is so easily missed because they are able to mask in class. But if you look at social interactions at playtime, for example, a different picture might emerge.

My DD is also 8 and what I'm hoping we'll get out of a diagnosis is support structures in place at school to manage her anxiety and low self esteem. And also for help for us on how we should be managing that at home to best support her.

She was crying at bedtime last night because nobody wants to play with her and she feels like she doesn't have any friends. I can see how awkward she can be around other children and how she doesn't read their reactions at all. It breaks my heart, she's my little girl, I just want to try to get her the best support for her I can.

@AutismProf - do you know if anyone is working on a scoring system that would better indicate autism in girls specifically? We've just filled out the forms for our DD and so much didn't apply or wasn't worded usefully to answer.

Sorry - yes definitely to all of the above too.

School/exams officer would only consider extra time if they had something tangible to nail it on, and as her ados referred to slow processing speed, this is what we pushed with.

First of all thanks for this - am learning a lot.

Sort of following on from @nidgey's point -

DS, in year 2, finds extended writing in school hard. His reading, reading comprehension, spelling, grammar, working memory and handwriting are all fine, and he isn't able to explain why it is such an issue.

Perfectionism is definitely part of it, but I think there's also something around not being able to do work that feels unstructured.

It's like the enormity of the available possibilities makes him freeze. We've had some luck with the Usborne story writing books, and I've just ordered a Story Skeletons book by Sue Palmer. Is there anything else we could do to help him find useful structures and get over that blank page panic?

I would like to know what support should be expected once you have a diagnosis? My ds is on pathway, he is 13 years. I've always known but he masked at school. The mask slipped during covid and school referred to paeds.
We have been through CAMHs, had a great experience, school aren't great, he had a resilience coach but the funding stopped. Do I need to find the support myself of will there be NHS support? If it matters we are under Blackpool teaching hospitals, so it may differ.

It’s just so much easier to make physical accommodations than emotional or mental ones, though. So I’m not sure that is a very cogent argument.

I’m currently immobilised with a leg injury, it’s boring and annoying for DH to have to do more for me ( though he is trying 😇). We are indeed doing the things you suggest re how I can cook, clean etc rather than just pile it on him.

if I lose my temper and say hurtful things, though, that is more damaging than being asked to pick up something I have dropped - and I find it more difficult to be aware of an oncoming crossness, because it is largely irrational. My experience of having lived with someone who was almost certainly diagnosable was that it was they who didn’t want to or see the need to change their behaviours. They didn’t want to lower the worktop, they thought I should just get on my ( very painful) toes and reach it.

Was that my failing? Maybe…..but compromise is a two way street.

Almost certainly diagnosable and diagnosed are different though - one of the crucial things about diagnosis is that it gives the person insight and a better understanding of their condition/neurotype within the world, so they don't become belligerently self righteous as a protection against a world that seems to judge them harshly and in ways they don't always understand.

I have an undiagnosed relative that I am confident is on the spectrum. He lasts about 2-3 years in every job. It starts fantastically, he works passionately and very long hours. However within a year or so he is hugely stressed by the emails that come round, trying to follow every directive to the letter and obsessing over management incompetency and unreasonableness. He judges anyone who works less competently or less long hours. Within 2 years all his work colleagues are awful and he's looking to move on again. I honestly don't think he's ever interrogated why he has such "bad luck" in his work colleagues, or that perhaps it could be something about him. There's no insight. I honestly think that a timely diagnosis 40 years ago could have changed his life.

In my opinion, because autism isn't just one thing, we will never find out a "cause".

Most autism is part of neurovariation, a particular brain type that is rarer than the "norm". This is the familial type, and inherited traits will differ person to person.

Then other autisms are linked to learning difficulties, hypermobility, particular genetic disorders etc.

The only things all autistic people must have is differences in their social interaction and communication, evidence of narrowed areas of specialist interest, some evidence of rigidity and repetitive patterns of behaviour, differences in their sensory world, and this has to be causing an impact - can be an internal impact (eg perfectionism, anxiety, withdrawn), doesn't have to be "challenging behaviour". Basically the person has to be experiencing a degree of stress in everyday life, or require significant adaptation not to feel stressed.

Differences in social interaction and communication doesn't have to be deficits. For example, it could be that someone gets on way better with adults or younger children than age peers. It could be that they are social but only when they are directing play, and aren't able to incorporate others' ideas or routines. It could be that they are perfectly happy playing alone and don't seek out others. Or that play is, on examination, found to be roleplaying previously watched episodes of a favourite TV show.

My son is very social and has great reciprocal relationships - with other autistics. His relationships centre around scripted banter and exploration of special interests. He has no idea of his friends' worries, what they are studying, where they are off to on holiday. However, since it works for all his friends I wouldn't call this "inferior" or "disordered"; it's just a different, subject based type of connection. It's real and valid.

Our referral criteria is definitely written as deficits 😔.

My experience of having lived with someone who was almost certainly diagnosable was that it was they who didn’t want to or see the need to change their behaviours. They didn’t want to lower the worktop, they thought I should just get on my ( very painful) toes and reach it.

More likely it that they were already making huge accommodations just to function in a world designed in a way that was extremely difficult for them to cope in, all day, every day, all through their life. Over time this wears you down until you are completely burned out so yes, sometimes they probably becane totally overwhelmed and "cross" when you decided to tell them they were making no effort to compromise or accommodate you and criticised them more despite this superhuman effort they were already making, without making anything even an order of magnitude smaller than that as a compromise yourself and said they should be meeting you half way, because you didn't want to move 10 centimetre when they'd already journeyed halfway across the galaxy. At least that seems to be the experience of most autistic people I know who have to navigate a world full of thoroughly unsympathetic NT people daily.

It’s just so much easier to make physical accommodations than emotional or mental ones, though

The irony of this! When that is precisely what autistic people are expected to spend their whole lives doing! Sometimes I do wonder who is it who has the deficits.

Thank you @AutismProf for a very interesting thread. I agree with so much of what you've said and your children are very lucky to have someone who understands it all so well.

I'm also a teacher and parent to an autistic child. I found a free Understanding Autism course through Free Courses in England. It was a really great introduction and has definitely informed my practice.

My son was dx at 2 and a half and my daughter at just two, I like to think they benefitted from their early diagnoses. It was a battle to get my son's referral to a paediatrician even though he was very obviously autistic. Indeed paediatrician said at first appointment "So your GP and HV think this is normal, I just worry how bad it has to be before they make a referral. You think it's autism well I know it's autism".
What can be done to ensure that GP's and HV's make the referrals needed? Ds had a classical presentation so it wasn't even subtle but still wasn't of concern seemingly. On the other hand dd was referred at 13months by a different practice after a loss of all skills and having a brother diagnosed I imagine.

My daughter is 9 and has (very emotionally, with shaking hands) asked for an assessment herself after watching 'A kind of spark' and feeling like she'd found herself for the first time in her life. We have always felt convinced she is on the spectrum due to lots of sensory issues, perfectionism, only having 1 friend, and lots and lots of other things. However, she is very high functioning. Academically she is doing well at school, never causes a fuss, is confident on a stage and they often wheel her out to perform the part of model student when the mayor comes to visit, for example. She didn't have any developmental delays, in fact the HV said she had the most advanced speech she'd ever heard at her 2 year check. Because of this, I don't feel we have a cats chance in hell of getting any support from the school with an assessment or more practical support in all the areas she struggles in (loud noises, lunch times due to very restrictive eating, PE, huge perfectionism and fear of failure, anxiety, insomnia etc). These things are becoming harder to manage as she's getting older. She wears ear defenders at the moment to places like cinema, museums etc but is becoming self conscious over these.
What would you advise for us? I don't think anyone would refer us but she feels she's in limbo as she feels she is autistic but wants someone to tell her so she can exhale. Up until she watched that show, she just thought she was weird