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!

I don't know - it's the kind of thing we do gently mention sometimes, but it's outside the scope of the key question we have been requested to give an opinion on - which is, "is this child autistic?". We mention familial links briefly in our post diagnostic training locally.

How do you - personally, not professionally - feel about the term 'autism' being used to cover a whole spectrum of ability in the UK without sub-classification? For example, our son is autistic but doesn't just need accommodations to help him function, he needs full-on 1:1 support 24/7. Personally I find it very difficult that the one term covers such a wide range of disability as expectations are placed on our son that he simply will not and likely never achieve.

Our much more nuanced understanding of the autism spectrum, and the neurodiversity movement - the idea of neuroaffirmative language, much more acceptance of autism as a natural variation rather than a deviance, and a real change away from "drill" and social skill training to make autistic people "as close to NT as possible" towards accepting autistic people's autonomy and value in society (this last very new, probably last 3 years or so that more places have been abandoning "social skills training").

Interesting thread!

How close are we to finding out what causes autism?

My son is 3 and a bit and has no words yet. Plenty of noises and understanding is improving. Is there hope he’ll talk one day and we’ll have meaningful conversations?

I love him so much, sometimes I forget he doesn’t talk just yet as he communicates so well with me. He’s very sociable and always smiling and happy. He’s changed my world 🥰 and I’m so happy I got him. I do worry about his future though and me not being here.

I love that little boy more than I ever thought possible.

What are the 'non obvious' for want of a better word, signs?

My son doesn't meet the classic signs, ie, can hold eye contact, is quite social but their play therapist seems to think an assessment would be a good idea

@JenniferAllisonPhillipaSue me too. I feel it’s detrimental to many 😔

Do you read the relationships with an autistic partner threads on here and if you do what is your opinion on them?

Generally, parents will be asked about early development in autism assessment (if they are still alive ) as this is a vital part of gaining the full picture in NHS standard assessments. We certainly would with our 17/18 year olds.

I don't work in adult assessment so I can't be sure, but evidence of atypical early development is part of the diagnostic criteria. Maybe some other posters on the thread who have been through adult assessment can comment more authoritatively?

How do you think we should help kids who are ‘not quite autistic’? My DD has autistic traits but not quite enough for a diagnosis and masks/copes at school. She definitely finds life more difficult than some people though (anxious, emotional, low frustration tolerance, rigid thinking). As she’s only got traits I find it hard to know whether to help her overcome her issues or to go more with acceptance.

Gawd, I don't know!

Sometime in the 60s, possibly?
Kanner and Asperger were both working in the 1940s and independently described their autistic clients (boys, of course) at around the same time.

Classification now is so broad to cover such a huge range of individuals, do you think we will move back to more nuanced categories? At 4.5 my son presents with high support needs, years ago he would be labelled as low functioning. Though I agree with why we don't do this anymore... I do find a lot of children I meet with such a different autism profile, it's hard to see it all as one diagnosis.

I am an educational psychologist by training, but work in a multiagency autism diagnostic pathway where I contribute both to diagnosis and intervention. I am Ados and disco trained.

My daughters school will not support an autism assessment as she doesn't present typically at school. However I believe for many reasons that she is masking. Autism is also in the family.
Is there anything I can do or must I wait for my daughter to break entirely? She is 8.5.

In your experience, is there a close link between ASD and anxiety?

How early can you diagnose autism? My 11mo DS was born very prematurely and seems different to other children. He has delayed communication and gross motor skills, but is very happy and shrieks with joy at all sorts of things. Just wondering when we can get help if needed for him

My son was diagnosed just after his 2nd birthday. This is the youngest I've heard of.

Lots of books and resources you could read just in case you need the knowledge 🙏

In your experience, do most autistic children have at leaat one parent with strong autistic traits, even if they are undiagnosed?

Is hyperlexia common especially amongst girls?

This is the double empathy problem, isn't it? We pathologise autistic communication because it is less common, and (used to) expect autistic people to do their darnedest to act as NT as possible. The trouble is, that is exhausting at best, and causes burnout and mental illhealth at worst.

Some of my very able autistic youngsters choose to undertake a sort of study of NT ways like an anthropologist. The aspergirls secret book of social rules - or pretty much any book by Jennifer Cooke O'Toole - are quite good at helping autistic youngsters crack the social code of NT life on their own terms (if they wish).

Parents/Family are usually needed (There's a form) for childhood history but it's up to the person to decide if the parents will get involved.

So they'll ask him/give him the parent form but he may not let you know or he'd say he doesn't want you involved for any reason.

Thanks for your answers so far. Very interesting thread! How frequently do you think that what is diagnosed (especially in girls) as Global Developmental Delay and then graduates to 'Learning Disability' is actually mis-diagnosed autism?

Are “tests” like the AQ10 that are posted all over the private diagnosis clinics actually a good indication of autism (or are these manufactured to make you assume that you should contact them)?

I score highly on these (9/10) and have often thought I may well be autistic as I’ve had social struggles and odd quirks throughout life and my parents recently told me they were undecided whether to push for a diagnosis when I was a child (bearing in mind this was in the 80s when autism was much less “known”) but didn’t as I was high achieving.

Assuming I (female in early 40s) got a formal diagnosis, is there any specific benefit? I’ve assumed for years I’m autistic and just learned to live with it because it’s me!

Do you think there is a need for (and in private do you use) a typology of subgroups given DSM V wiped away PDDNOS & Aspergers. I have one of each. The specifiers don't exactly roll off the tongue & there's widespread outage for the use of 'high functioning' (because of what it means if you're not).

As an educational psychologist what evidence would you want to be presented to you to warrant EOTAS for a child with Autism.
Why are CAMHS allowed to discard the anxiety of those with ASD and simply say it is co-morbid so not within their remit to help, followed by the damning 'its part of their ASD, you wouldn't want to change your child would you?' No I don't want to change my child, I love them unconditionally, but they need help to have some chance of a happy future and however hard I fight that help is not forthcoming.
Do you have any suggestions on where to find the help they need if you are unable to throw money at the situation?

I wouldn't feel competent to answer this, sorry - it's outside my area of knowledge.
I guess those people must feel some kind of disconnect with society or those around them to be seeking answers?