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!

Most people
would not consider themselves an expert in anything but themselves. Ive worked with Neurodevelopment disorders for over 20 years and mental health for over 35 but would never consider myself an expert.
What I do know really well is how the services and Trusts/ organisations that I work for operate. I cannot comment on the rest of the UK or make sweeping statements.

Well, you can't please all the people all the time....

And actually, do you know what, I do have expertise in this area. I have not only worked in it for 20 plus years, I have lived it my whole life on way or another, studied it, informed myself, advocated for my children, seen it on both the parents' and professionals' side. On this thread I have tried not to make "sweeping generalisations" but to answer questions people have asked, in good faith. I have referred them to their local pathways or said when something is outside my area of knowledge.

So if you have worked in an area for 35 years and don't feel you have yet developed any expertise, then who on earth does have expertise?

This thread has some of the best and most measured answers around autism I’ve read in years. So do please carry on and ignore the negative.

What should grandparents do to help autistic grandchildren have a better Christmas?

Have you actually worked in the area of autism for 35 or 20 years or just generally in neurodevelopmental and mental health problems? If the latter, than of course you're not an expert. You haven't spent years working within one specific area of those two fields. The area of neurodevelopment an mental health is massive.

I have been lurking @AutismProf this thread is incredibly useful, thank you.

My 14 yr old DD has recently had a MH crisis and CAHMS suggested that her extreme anxiety, plus some sensory issues and encyclopaedic knowledge of eels (current special interest) may indicate some autistic traits/neurodiversity.

From what I have read, CAHMS don't support ASC children with anxiety as it is 'just' part of who they are (I'm probably cynically simplifying that...) But at the same time we are of course desperate to help her. Obviously everyone is different, but are there some useful ways to help her reduce her anxiety?

Is there a link between autism and migraine?

@MyOtherCarIsAPorsche interesting. My dd has both, despite there being no history of migraine.

@AutismProf has given some of the most expert posts about ASD that I've ever seen. The very fact that she caveats everything so carefully shows that she knows how individual ASD is.

@MyOtherCarIsAPorsche I'd be really interested to know that answer too.

What do you think of the parents who are obsessed with getting a diagnosis and even when the child has been assessed as not having autism they still don't stop?

Is there a way to prevent autism? when pregnant or raising a child?

@bumblebeebuzzy no.

Stepping out of response order to say to bumblebeebuzzy

You can't prevent autism in pregnancy, but I guess you reduce your chances of having an autistic child if you are NT, your partner is NT, and everyone in your family is NT. Plus if you don't have a prem baby, a baby with a genetic condition, learning disabilities etc. But that is largely beyond our control, thank heavens.

There have been studies looking into attempting to reduce likelihood of autism. Autism Speaks in America used to fund a lot of research, and in the UK we had the PACT research about 10 years ago which attempted to reduce "severity of symptoms" initially but has morphed into a way of (benignly) increasing communication attunement between parents and autistic children.

There have always been programmes such as ABA and son-rise (now renamed but I can't recall new name) that have made claims about reducing autism "symptoms".

However, nowadays, there are more people - particularly autistic people - saying that such approaches as ABA are dehumanising at worst, and just encourage better masking at best, and that it's ok to be autistic. My view is that some small aspects of ABA, such as PECS, used kindly and with clear purpose, can be a way to help autistic children who otherwise have no way of being predictably understood to have a way to express their needs; but I am not in favour generally of extinguishing behaviours etc unless these are harmful to the youngster or dangerous.

I appreciate that autism is a vast spectrum and that caring for youngsters who will need life long 24 hour care is not something that most people who embark on parenthood would have in their vision and expectation list. But just like everyone else, autistic people vary enormously in their talents, passions, roles, and lives. Imagine if we had stamped out autism hundreds of years ago - no Mozart, no Newton, no Emily Dickinson, no Einstein, no Tesla, no Bill Gates, no Pokémon.....
I would not change my autistic children (though I might make my son magically less avoidant of showering!). They deserve life, they are valid and wonderful and loved.

I wasn't trying to be rude, was a genuine question on my part as I don't really understand autism hence on this thread to learn

Sorry what is NT?

NT - neurotypical. The more common brain type.
ND - neurodivergent - the less common brain type that includes the developmental conditions such as ADHD, autism, dyslexia, dyspraxia (developmental coordination disorder), developmental language disorder, etc.

Thank you for explaining!

@AutismProf
Hello
Thanks for running such an interesting AMA

Someone asked you about books for ND adults parenting ND children. You mentioned looking into your network- wondered if you found anything?

Thank you

Sorry, no, though someone on the thread said they were working on something...I found a couple of blogs, is all.

If you're not autistic, you are not an expert

I don't think our positions are mutually exclusive. As you say, autistic people need coping skills enough to live in the world as it is.

Some support in social understanding of the NT world is helpful, but not with the subtext of "this is the right way, if you learn this right way all will be well, your natural way is the wrong way". The balance is in fitting someone for life, versus trying to train them out of their natural nature. Offering autistic people the chance to experience friendships in which masking is unnecessary, where your friend doesn't take offence or take it personally if you tell them you are too peopled out to talk much today, where you can connect deeply over specialist subjects, isn't selling them short. It's a positive.

I guess in your analogy, I promote the idea that an English person living in Japan knows enough of Japanese culture and language that they can make themselves understood and understand the basic cultural rules sufficiently that they won't draw high levels of negative attention. However, it's fine for them to seek out other English expats for their close friendships, where they speak English and eat English foods without guilt or shame, rather than feeling like unless they can move through Japan indistinguishable from a natal Japanese person, there is something wrong with them and they have failed in living in Japan.

Lovely to hear! Thankyou for the kind words too.

Thankyou :)

No, I don't think everybody is on a spectrum as in a linear "not at all autistic" to "most autistic ever" person. The spectrum is more like a wheel to mr. I will try to attach an example graphic. I do think it's possible to have issues in a few areas of the "spectrum wheel" but for this not to constitute autism....for example, I have some sensory issues, I cannot stand to be sticky, it makes me shudder. I also have done executive functioning issues around planning and task prioritization. But I don't have enough issues of neurovariation to "tick all the boxes" to make me autistic.