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!

Yay!! Thank you @LivMumsnet
As I said before, the pinnacle of my career!!

Holidays are over now so I will start answering again, with apologies for being missing in action.

Congratulations OP, well deserved 😊

Thank you so much for this link! We have been looking for somewhere for our son to volunteer and this sounds fab. He is probably too young at the moment but I will ask what their minimum age is.

Woop! Well deserved. Signed, a thoroughly approving autistic woman 😄😍

I’m delighted to read this too. It’s so refreshing to have someone discuss autism in educated and understanding terms unlike most of the rest of MN where the vilification of autism is prevalent.

Another thumbs up from a (very recently and very late diagnosed) autistic woman. Well done, OP. When’s your book coming out? Hint! 😄

Fantastic! I love this thread. I do some autism education (im not a clinician) and everything the OP posts I want to say "YES!"

I find this so interesting- my DD15 dream is to build a ship and sail away to an island, where she'll be in charge and everyone will live 'in Georgian times'. She is passionate about this and planning this future is all that keeps her going.

Sadly this is a really common situation for internalising autistic people, often girls. They do OK at primary, are conscientious and no trouble, express school based anxiety at home but not in school, and then don't manage the transition and wheels come off somewhere around year 7 / year 8.

Is she still attending? Emotionally based school avoidance (EBSA) is common in this cohort.

One issue is that indie schools do not have to follow the SEN code of practice by law (though many do) so as a parent it can be difficult to find suitable leverage. The school may have profs it has links with, though it's likely you would need to pay for prof reports etc.

With a large health warning as obviously I haven't met your DD and don't know the full situation, but I would imagine she needs an ehcp first, and then a discussion with the EP about what type of setting would best meet her needs. The statutory process would then include a consideration of the range and suitability of provision available for your DD.

I guess the key points to make in a request (model letters can be obtained from IPSEA website) is that her mental well-being is suffering, she is autistic , and at risk of EBSA or becoming NEET (not in employment, education or training).

The key question for you would be, is this a situation that more or different support would remedy at this school, or does she need a school with greater expertise or more flexibility around curriculum?

I would say a Venn diagram! Most autistic people aren't trans, but a hefty volume of trans people, especially (and this is crucial for safeguarding and considering an approach to youngsters who declare a trans identity) in the ROGD cohort, are autistic. Figures seem to hang around the 40-50 percent figure in the UK, around 25 percent in a recent US study.

I think trans provides an answer to why some autistic teens feel like they don't fit in with same sex peers (especially, but not exclusively, if they aren't diagnosed), and a ready online community that is accepting and welcoming. It fits with a brain that likes to search for 'truth' and answers that many autistic people have. It's also spiral because it protects itself as an ideology; if you question trans teens' lived experience you can be batted down without nuance. That is quite empowering to someone who has felt "wrong" a lot in their life. Now they are part of a community that says they are right in their assessment of themself, that no one else can question this and maintain a moral high ground (though the tide is, hopefully, beginning to turn very slowly).

I am aware I am not explaining myself well, but essentially yes, I see strong links, and I think some of those links contribute to why TRA communication can be so polarised. It's a very seductive thing, finding a space where you not only belong, but gain social status and the holy grail of holding a characteristic that cannot be questioned or interrogated without the interrogators being the bad guy. Being Trans demands acquiescence to your expressed feelings, and support to achieve them (in many places). Being autistic tends to mean being trained to be better at stuff that's hard for you, and still not getting it right, and being socially low status. No wonder, frankly.

Did I answer this? Apologies, I am getting muddled.

It depends what you mean by discipline.
Would I tell off or punish a child who didn't understand what the expectations they failed to meet? No.

Would I have simple rules, plenty of praise and attention when the child is behaving in ways I would like to encourage? Yes. Would I intervene, say "no!", Redirect, to prevent other children getting hurt? Of course.

This comes back to this idea that we respect autistic brains, but that doesn't mean we don't try to help someone develop skills for life. They are effectively saying he's unteachable and that is very damning, and also not true. For example, I bet they have taught him that he has to wear a seatbelt in the car.

Of course he needs to learn what is acceptable, and if he really cannot, then he needs supervising to safeguard your son and any other small children. That doesn't mean yelling at him, but neither does it mean shaking their heads and saying "he can't help it".

I don't know for sure. I imagine the referral criteria in most places will be based on DSM or ICD. These are of course medical models and deficit framed. As I have said elsewhere, you would need to see some evidence of difference, but not necessarily deficit. I suspect different teams apply their criteria slightly differently. Most areas are familiar with masking by now but parents will often describe the typical presentation - conscientious and compliant in school, meltdowns and distress at home. That's enough for our team - and actually schools will often say "can get a bit anxious" or "doesn't like joining in PE" or something which is a bit of a clue that they are not sailing through school.

In my area, we have two levels of triage - all requests are screened, ones that clearly meet criteria are accepted and ones where it's a bit more equivocal are discussed in our multi agency meeting.

There is always a chance of error in autism diagnosis as it's based on history and observation. There's no absolute "symptom".

An autism assessment should include a history, a clinic obs and sometimes (ideally, in my opinion) an obs in a setting, and an assessment such as ADOS. (Ados itself is not mandatory). This process has a lot of integrity. They should ask about trauma in early childhood, learning needs, etc and consider whether the balance of the evidence is for or against diagnosis. But it is a judgement and no doubt mistakes are sometimes made.

I didn't see the program about ADhD you are referring to, but be aware that journalists can spin things to suit a narrative, and things are rarely black and white. Most - by far the majority- of people in autism diagnosis in this country are trying hard to get it right, and take their responsibility seriously.

I am ancient, in my day prospective EPs had to take a psychology degree (or conversion course from another degree), then a pgce, then teach for at least two years, then do a master's in educational psychology. Nowadays it's a psychology degree or conversion, relevant experience, then 3 year doctorate training.

Then a few years in to being a generic EP, the role came up in the (then) new autism multiagency team and I applied for it! I am WAY better now with autism than I was back then, but I guess they saw enough to offer me the role.

I am really sorry, I am not sure what an EMHP is...a mental health professional but what is "E"? I apologise, I don't know the career trajectory in that discipline - but maybe someone else on the thread might be able to advise on additional courses that would be helpful?

Fwiw most uni psychology courses and A level etc are much more mathematical and researchy than the actual job of a psychologist day to day. I haven't done an ANOVA or two tailed test in 25 years of practice, lol. Been way less useful than my degree suggested!

Hi @AutismProf my goodness what a wonderful and interesting thread to read. Thank you so much for your time towards everyone. I've just binge read the whole thing since last night.
I've a question about signs and symtoms.
I've just recently had a meeting about my 4 year old daughter where they flagged up concerns about her voice/accent. I totally agree as it's obvious she talks with an accent, sometimes monotone. She said she is only becoming comfortable in making friends now in term 3 also. I genuinely was floored that they brought up ASD though as she's the most sociable, happy, fun, child at home. Can be more serious at school, scared of getting into trouble, will stand back and observe before joining in, but will join in happily when ready. No specific interests, no sensory issues, no rigid thinking or inflexibility around anything. Can be very particular about her work but not to an extent that she has a meltdown if she doesn't finish. I guess it's the accent that's worrying me, she has a posh nearly British accent and we are nowhere near England. Could this on its own mean ASD? I know my question is basic compared to some but I genuinely don't know who else to ask that might be able to help me.

What a fantastic thread.

@RhinestoneCowgirl I realized you contributed a few months ago but if your DD is still interested in eels when she is older the Environment Agency literally have a job role of Eel Specialist and that person advises the project team building new flood defences, weirs etc on what is required to keep eels safe re their habitat and what is required for their migratory journey and on eel passes etc. The EA are very inclusive of ND and even run ND internships so is something to keep in mind as she gets older.

Hi @AutismProf. Thank you again for this thread and I hope you can offer some insight on PDA. I am trying to educate myself as I support secondary aged students who are autistic, and some have a diagnoses of PDA, or traits. I am learning that PDA is supported by crippling anxiety. What would be a good resource for training but specifically for older teens? Also, say for things like counselling/therapy, doesn't that become yet another obligation/demand that the child might want to resist? Is there any literature for how to best support PDAers of secondary age? Online training? Thanks so much!

Hi there.
PDA is a tricky one as any autistic person in overwhelm can become "demand avoidant", whereas "true" PDA is really very rare.

True PDAers need a rotating programme of activities that refreshes itself frequently (about every six weeks) and is based on hitting each of several core objectives: things like, get some exercise, learning, independence skills. The activities to meet these objectives, all based in interests of the young person, then change up often enough that the novelty aspect that will carry many PDAers for a few weeks before the extreme demand avoidance kicks in is not lost. It requires immense ingenuity for the support workers and to be one step ahead of the PDA. (Not the YP, the PDA).

Kids in overwhelm or who have had a trauma response to education, who have therefore become demand avoidant need a different approach. A low demand approach with relationship building at the core and the sense that you understand that it's hard for them and you have their back. Very small goals target set with the young person. Planning with them - we often do a task where the YP assign items to comfort zone, stretch zone and "nope". Then we target one of the stretch zone targets. For example, texting mum might be comfort zone, phoning mum in stretch and phoning a stranger in "nope". Then we would set up a programme on phoning mum - if the YP agreed that that would be a useful thing to do and something they'd like to tackle. Having a better understanding of the curriculum and how its expectations can be traumatising to able autistic youngsters is also really helpful for these young people as it begins to help them understand and evaluate how they ended up in overwhelm and trauma.

Online training...no but if you DM me I can recommend some training coming up that you may be able to access?

@Toddlerone I am a teacher and a mum of a child with PDA (I can see what OP is saying though -- as long as my DD's needs are met and she likes the person who's asking, she's only mildly demand avoidant).

Anyway, I have a copy of The Teacher's Introduction to Pathological Demand Avoidance (Truman) which has a few useful tips in, although a lot of it isn't very useful for mainstream settings (if that's what you're in).

@AutismProf I wonder if you can let me know if it's possible for someone on the spectrum to undertake 'pretend play' when a child ?

My DS was tested at university as they were offering to test students. He came out as 'being on the spectrum'.

For the record, he's a functioning adult who achieved highly academically, has lots of friends and can hold down a job.

As his mother I know as a child he also did much pretend play and liked dressing up as other characters.

I'm not disagreeing with their diagnosis - it's doesn't matter now. However, would you expect his childhood imagination and neurodiverse diagnosis to be mutually exclusive or is it possible ?

@ItsReallyOnlyMe children with autism can play in role play but when you observe closely you can see its often not in the same way as their peers. DD would join in and copy what someone else was doing, or she would initiate role play but actually what she was doing was perfectly reproducing what she had seen happen on TV, in a book or in real life. She very rarely came up with a role play game on her own and has always struggled with creative lessons (not the skills she's is very talented) and thinking up original ideas.

Yes entirely possible. My own son liked dressing up. He did prefer to be actual characters - superman or Spiderman, or maybe "a doctor" rather than dressing up and inventing a completely new character.

However diagnosing somebody who has never clashed with their environment and appears entirely functional seems a bit strange. Can you tell me more about that process?

@AutismProf I'm not really sure how it came about. He only recently told me about it - he did offer to let me see the report so perhaps I'll take him up on that.

He was at a university where there are probably many undiagnosed individuals (a well known engineering heavy university), so perhaps it was someone's PhD.

Interestingly one of his friend's mothers also thought he was on the spectrum as he doesn't eat sauces (no soups, food in a sauce etc). Is this a thing ?

Personality wise he is a perfectionist, and as a child would have meltdowns if things weren't quite right.

@ItsReallyOnlyMe, I wonder if it was an actual diagnosis or something like the Cambridge ‘autism quotient’ self assessment tool? I know they administered that to staff and students in engineering and related courses as part of their research.