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!

Search for Pooky Knightsmith - book in progress but she provides excellent advice

There's an earlier post that touches on this, but yes.

If you think about the world a few hundred years ago and for all of prior humanity - people lived mostly in small communities where they would know most people and most people would know them. Lives were simpler in sensory terms - no screens, no cars, no bright lights, no planes, no harsh chemical smells of disinfectant or perfume. People were often born into trades. Being otherworldly was interpreted as religious or even sanctified - you could retreat from life and be a monk or nun, or a hermit. If you were wealthy, or male, you weren't really expected to have skills of looking after yourself. Someone else would provide food, clothes etc....

Modern post- Gove education, compounded by lockdowns, is causing a mental health emergency. Referrals to camhs went up, iirc, 81 percent 2017 to 2019, then a further 60 percent 2020-23. I am not great at maths, but I think that means where 100 referrals were made in 2016, in 2022 there would be 100+81+(60/100 of 181) = 289 referrals. I think this is a combination of social media and the online world, and the deliberately harder, overpacked curriculum with no proper routine arrangements for those who struggle academically (did you know, a perfectly decent mathematician, doing everything necessary at age 16 to pass their maths GCSE, will get about 25 percent on the higher paper? Imagine what it does to you mentally to not be able to do 75 percent of a paper - you really wouldn't feel like you were any good at maths, would you?)

Autism isn't "caused" by all this. People were always and have always been autistic. It's just that they didn't clash with the expectations of their environment so routinely; the world was by and large, in some ways, less ill fitted for ND people. (Plus there was no language for autism, outside of "eccentric", "loner" type words).

Hi, we have one family member diagnosed with autism and quite a few undiagnosed but likely suspects! I’ve also really enjoyed this thread, thank you so much for taking the time to answer so many questions.

I always worry that I’m going to miss something important, either physically or emotionally, with DS (14, diagnosed when he was 5). Physically, he often doesn’t notice sensory stuff like pain. Today for example, he has a very unusual bruise pattern on his upper arm but doesn’t know where it came from and didn’t know it was there until asked about it. Emotionally, he never voluntarily speaks about feelings or about things that happen, and it’s different to just not wanting to talk, because he’s always happy to chat. It’s quite hard to explain. I wonder if it’s partly on a social level, in the sense that sometimes he’s just not quite sure what’s going on and if it’s bad or not. I recently heard about alexythymia and think maybe this best describes a lot of it.

So my question is… do you have any advice on how to support his ability to identify and feel able to express physical and emotional feelings?

Ok

I hate this idea that lived experience is the only validity. I do have lived experience.

If I haven't got a brain tumour, can I be an expert brain surgeon? If I am not an engine, can I be an expert engineer?

Amazing thread. Thank you.

My DC was very recently diagnosed and was given the diagnosis of Asperger's. I questioned this wording at the time but was told they are still using it here as they are still using ICD-10/DSM-V. Does it matter?.

I tell people DC is autistic rather than has Asperger's. Does that matter either?

Yes you have experience and valid experience but you're not an expert. There are plenty of autistic people writing books, giving lectures, doing research, performing comedy on the subject. Guess whose voices are heard most as the most valid? Not always the autistic people. Guess who is in charge of how society runs, how health services run, how assessments are carried out, what adjustments are made - not autistic people for the most part. We are many but we are still a minority. We don't need you to be an expert and proclaim yourself as such.

There are quite a few people who don't understand the use of inverted commas around statements to demonstrate irony or distancing from the statement.

Example : Brexit has apparently been a huge success!
Versus : Brexit has apparently been a "huge success"!

Ok, so if I say that actually I am autistic, and then go through this thread and answer all the questions exactly the same as I have done, but with the validity of being autistic how would that change things?

Look, there are loads of shit people out there working in autism. I am trying really hard to make things better. I genuinely believe that I understand autism better than most NT people, and if I can be an interpreter, then isn't that good? I used the term autism expert a little ironically, a little provocatively, and because whilst I would never introduce myself at a talk as "an expert", it is something that colleagues sometimes say about me. Don't get hung up on the use of one word and throw the baby out with the bathwater, if you agree with my posts.

I have 2 questions

1. You have mentioned about problems in processing in ASD, is that why there is an overlap between dyslexia and autism as I am autistic, dyslexic and have ADHD. My dyslexia diagnosis states weaknesses in auditory and visual cognitive processing. Could this be an ASD overlap?
2. Can ASD be prevented or minimised in pregnancy by avoiding highly processed foods, E numbers and artificial sweeteners. There are studies that suggest these change the brain development in pregnancy and therefore have the potential to cause autism or is this a myth?

Wow wow wow
You know I was going to say that yes you do have above average knowledge which is great. I get that you have experience of caring for autistic people also.
But when you said "interpreter" and started insulting me, I'm out.
We can speak for ourselves thanks. You might just have to adjust to listen.

Can ASD be prevented or minimised in pregnancy by avoiding highly processed foods, E numbers and artificial sweeteners. There are studies that suggest these change the brain development in pregnancy and therefore have the potential to cause autism or is this a myth

The only things l ate in my pregnancy were pears, cucumber, salad, salmon, milk, chicken and potatoes. Literally from day one l couldn’t face anything else.

My Dd is still ASD.

I meant an interpreter the other way. I have stated at numerous points in the thread that the NT world fails to understand autism. That doesn't mean I don't think autistic people can speak for themselves. It's just that when an autistic person does it, they aren't acting as an interpreter are they? However, there aren't enough autistic people working in the field so there is still a reliance on non autistic people on the ground. Being good at representing autistic viewpoints and rights whilst not being autistic isn't a crime.

I haven't insulted you at all. Respectfully, it was you that jumped on a single word (that I have already explained in the thread was being used ironically) to dismiss me.

i do take offence at your assertion that I need to "adjust to listen" to autistic people. What do you think I should do? End my career because I am (probably) not autistic? Stop advocating, diagnosing, training?

I don't want to dismiss you.
And no I certainly don't want you to give up your career!
I still have issue with the points I have already raised but not going to go on about it. My intention (whether you believe it or not) was not to upset you. And I believe you when you say you didn't intend to upset me.
So I will leave it at that.

Well, that's very magnanimous of you, I appreciate it. Sometimes tone and intent get lost in print.

Believe me when I say that empowering the autistic community to live happier lives is my life's work. It's not just my job, it's my life. The world chewed up my beautiful boy and girl and spat them out. My boy may never recover. I want that to end. I want education that is fit for purpose for ND people. I mean, I want more than that, but this is my only sphere of influence and it's tiny, but it gets me up in the mornings.

Mine too so we can agree on that. If a psychologist got hold of me I'm sure they'd say my last "passion" was autism. My own career is very much focused on human rights and advocacy and while I work in a different area now I (as you can see) am still very passionate and knowledgeable about autistic adults. Luckily you find us everywhere.
One thing I do find is that there is a disparity and friction between autistic adults who are "like me" - I won't say high functioning - and the parents of autistic kids and adults who need 24/7 intensive support and have additional struggles. And then add in well meaning and experienced professionals. Each one of them coming from their own viewpoint and completely valid and often striving for the same goal, but the past traumas, the let downs, the mistrust means that we don't make as much progress as we want to. Take hospitalisation of autistic kids and adults for years on end for no justifiable health reason (and that's before you get to the abuse and neglect) - pretty sure no one thinks that's a good idea. But let's just stop bickering and excluding and work together and maybe it could be stamped out altogether.

I bet you wouldn't be speaking for my daughter either, though. You'd be speaking for the subset of autistic people who can articulate themselves and represent their thoughts. My DD is 17 and her overriding views on life are 'I don't want to be an adult', 'Tesla's rule', and 'People who litter should be sent to jail'. Who wants to go to read her book, listen to her lecture, etc.? No, didn't think so.

If you have autism you might be an expert in your own autism but that doesn't make you an expert in other people's.

The OP is trying to discuss ASD from her professional knowledge and is doing a pretty good job.

Ah there you go.

Eye contact, as far as I am concerned, shouldn't be the one thing that dismisses autism if all other signs point in that direction. It's about the whole picture, as I said earlier, not any one behaviour in isolation.

If the ados was inconclusive, as opposed to "negative", are they proposing to repeat it, or do new or different assessments to try to clarify?

I guess there is also the possibility that he isn't autistic? Could he be differently ND?

If you think all 3 are autistic, then yes, I would pursue diagnosis for all 3. The team would hopefully be familiar with "female" (internalised) presentation of autism.

The 'classic' able autistic girl I work with in my specialist role is compliant and copes at primary, often having outbursts at home which school often ascribes to parenting, but which the girl relates to aspects of school. There is often no enhanced transition and the first time schools begin to notice an issue is when the transition to secondary fails around mid year 7- to beginning of year 8, with emotionally based school non-attendance. This happens when the girl can no longer cope and it's a pattern we see over and over. In almost every case, there were precursors and harbingers at primary level in a kind of "failure to thrive" way, often not fully acknowledged by school. In most cases the autism diagnosis only happens once the child is in EBSA.

So in my opinion, it's important to advocate for our girls and ensure their needs are understood early, because we know there's often a mental health toll if needs aren't understood and supported.

You might find the little Venn diagram I posted above useful?

I am really not terribly knowledgeable about ADHD, only standard level understanding really. I do know dual diagnosis is common. My understanding is that the core "difference" behind the observable behaviours is important to identify.

People with ADHD only don't tend to struggle in terms of core social understanding. They may be be "full on" and be 'inappropriate' because they are spontaneous, don't always think through their actions, and struggle to suppress impulses (executive functioning issues). But the behaviour which others interpret as inappropriate (recognising that I am using NT language and perspective, but to try to make my meaning clear) isn't about an earnest core misjudgement (of NT functioning) , it's more about a failure to plan, consider or monitor.

This thread has made me realise I need to really brush up on my ADHD understanding.

How to get a referral onto the ASD pathway when the issues only occur at home? School put a referral through that has been denied because DD has never shown any issues at school. At home she has severe meltdowns that last for hours. Screaming, panic attacks, physical attacks, constant repeating of certain phrases and cannot get herself out of it, nor can I, until she's physically too exhausted to carry on. These are now daily, sometimes several times a day and also in public - supermarket etc. But never ever at school. Social services have refused an Early Help referral. GP refuses to do anything and says it's up to school. I've been reporting this since 2017. I can't be a physical and verbal punching bag for an 11 year old any more, I’m at the end of my tether. Lone parent, no family support.

I don't have a link to them but you can buy ear plugs that are designed for gigs that let the full range of sounds through but at a much lower volume. I wear them in the cinema and they make such a difference. They may be more discreet for your DD if she's getting self conscious about more visible ear defenders.

I think the lack of understanding of OP’s inverted comma highlights clearly the misunderstandings that can happen when it comes to communication.

Loop earplugs come up on my socials all the time.

You've just described my middle daughter perfectly, except that lockdown kicked her EBSA down the path to year 10.

In primary she needed accomodations. Diagnosis finally in year 7. Transition to secondary school saw all of the accommodations stripped away.

In lockdown she was allowed to go into school and was fine when there were 6 kids in the class. Then 3 more joined and she immediately couldn't cope so stayed home to do lessons.

In year 10 she completely fell apart.