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!

Can more be done for children in schools, in your opinion?

Do you have any real life experience of autism? For example, are you yourself autistic? Do you have an autistic child?

Do you think there is an “epidemic of diagnosis” or just more people being correctly diagnosed because it is more recognised?

I was diagnosed with autism last year. One child was diagnosed 10 years ago and the other 2 years ago.

Why is there no mention to parents that if all their children are autistic, they might be too? I figured it out myself and pursued a private assessment.

Thankfully I live near the Lorna Wing Centre and could afford their fees. They were amazing.

What is the biggest change you have seen in your work since you first started 20-odd years ago? What change makes the most difference to the - presumably children? - you are working with?

My son is 17 and thinks he has autism and has asked to be referred for an assessment. I have not had concerns that he is ND over his life (I work in a related area and have worked with many children and families going through the diagnosis / assessment process so I am reasonably knowledgeable about this).
he sees someone at camhs without me about anxiety and I don’t know what he says. He is an excellent actor and can convince anyone of anything. He has over time been convinced he has adhd, schizophrenia, anxiety, depression, and ocd. Will we as parents be involved in any assessment process with a child who is nearly an adult, as I am really worried that he is persuing a label for feelings that I do not think is accurate, and if we as parents are not involved he can tell them anything.

It’s in the OP - over twenty years’ real life experience of autism.

When was the first diagnosis of autism made in the UK?

What did you do in autism assessment, diagnosis and intervention on the education side?

So much is said about ABA being traumatising and I believe it is - but is there any social skills programme which will help DD to fit in when she wants to, which operates on a “you’re fine, they’re (NT) fine, they’re just different, this is the best way to talk to NT people?”

Yes - for starters, there's very little exploration of how autistic learning profiles interact with the national curriculum, and almost no acknowledgement of neurodiverse learning styles by the government/powers that be. This has led, combined with lockdowns etc, to a huge explosion in emotionally based school non-attendance in the autistic population.

There's also way too much training directed at "behaviour management" instead of understanding the pressures that cause such "behaviours" and reducing or eliminating them, and too much prioritisation by schools of the needs of those with externalising autism (often boys) over the needs of those with internalising behaviours (often girls).

Do you think lots of adults are self diagnosing incorrectly? For example, it's easy to fill out a quick questionnaire and come to the conclusion one has autism

Can you offer any advice on children with autism and sickness? My almost 8 year old has autism and we are struggling as he seems to be physically sick quite often. I have read online about children with autism having problems with the gut. The GP has recently prescribed omeprazole but we haven’t started this yet as my son is currently on antibiotics for tonsilitis but we will start once he finishes these.
he seems to be sick when he is “het up” sometimes he gets so excited and wrapped up in a game or topic that it’s impossible to calm him down he almost gets hyper. And then he only seems to calm down by crying as it will eventually get too much and then sometimes that night he will be sick overnight. Its never during the day he is sick only overnight. Thank you

Yes - hugely ND family including parent and two of my kids.

I don't think I am autistic, but I am fluently bilingual in autism and NT!

@AutismProf hear, hear 👌

Is it always beneficial to have a diagnosis? I mean if there are no learning support needs.

Is it possible to differentiate between anxiety that is autism related and normal anxiety?

My little girl has autism (high functioning - dislike that terminology but don't know how best to describe) and she suffers with the most crushing anxiety that affects her day to day life so badly.

CAMHS have said they won't treat autism related anxiety (they haven't even assessed her just discharged her after GP referral). I want to be able to go back and say no this isn't autism this is anxiety affecting her life and get her on the list for treatment/help. (I can't afford private otherwise I would go that route).

Thank you 😊

How do you feel about the fact that it was reported (somewhere, but don’t know where) that a high number of transgender people have autism ?

My daughter was diagnosed last year at the age of 17. We always thought it was a possibility but hadn't followed it up until she developed sudden onset of tics during covid and then we joined the dots about her high levels of anxiety and how challenging she found the school environment - she was much happier learning at home in lockdown.

What is the best support we can give her as she goes off into adulthood? One of my key concerns is that a high percentage of autistic women have experienced sexual assault as a result of not knowing how to read intentions/social situations etc. I don't want her to become another statistic.

Also how can we help her regulate her emotions. She is permanently in fight or flight mode and jumps at everything. Could an occupational therapy offer support with this? I've read about it being useful for younger children but didn't know about older teens.

My STBXH has autism and despite saying everything was fine has cheated on me multiple times over the years, which was initially what prompted referral for a diagnosis. He doesn't seem to know why he's done it. Any insight from your perspective as to why?

And also, what sort of support is available for people like him who had an adult diagnosis and just seem a bit lost and unable to cope with life? Especially now I won't be supporting him.

What are the most important things to include on an EHCP ref that’s being made while we wait for assessment?

How is it best to explain to my 10 year old son that we think he is on the spectrum, school does now after much intervention, and the extra support is so he doesn’t have to mask anymore (he’s already having private play therapy) ? He talks about not wanting to be alive sometimes, but so far hasn’t self harmed.

Can you recommend any books that might help parents who themselves have autism, in parenting a child with autism?

Sometimes it's like we are deers locking horns and I can't always see what he needs from me because I have my own difficulties with managing or understanding a situation.

I think we now have a far more nuanced understanding of the autism spectrum. When I started, girls were rarely referred (outside the autism and severe LD "kanner" type referred in early childhood). Nowadays it's much closer to 50:50 . However our tools (ados etc) aren't great at recognising autism in females in particular, so getting what we call your "autism eye" is vital.

I do think autism is a variation in natural brain type rather than any kind of rare "abberation" and I always suspected that we'd end up with about 1 in 30 odd being recognised as neurodivergent.

So yes, better at identifying, wider understanding of the spectrum, plus of course more challenging lives in terms of constant stimulation of electronics, social media etc which means some people who may have "coped" in simpler times and not needed this kind of exploration to help them understand themselves now do.

Antlers, not horns ffs.😂

In your experience, how inherited/genetic is asd? Google searches give wildly differing "guesstimates".
In an ideal world with endless resources and no ridiculous waiting times, should parents and siblings be assessed after a diagnosis?
With one child with mid teen diagnosis of asd and another with a late teen diagnosis of adhd (and a strong suspicion that each one would probably meet the criteria for the diagnosis they don't currently have), I'm pretty certain dc3 is not NT. However, they currently seem to be coping at school and socially, after displaying early behaviours that were dismissed out of hand by the gp.
Have they simply learned coping and/or masking strategies that currently work for them? or were those behaviours simply immaturity?
DH & I do not have any diagnoses, but definitely have asd and adhd traits, and there are diagnoses and evidence of ND traits and behaviours in both sides of extended family. I wondered how typical it is for you to come across families where the diagnosis of one member leads to further diagnoses in immediate family members?