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’ve just seen this thread is still active @AutismProf thank you it inspired me to apply for a psychology masters conversion- gearing up for this next year. Aiming to apply for the Ed psych course at some stage although I realise it’s hard to get on and a bit of a long shot

I’m thinking a lot about one of my DC who is not diagnosed autistic but who would certainly meet the criteria that you’ve described as on this thread. Very passionate and unusual special interests (always one thing at a time), prefers adult company in general although has some friends with similar interests. Currently Y7 and coped unexpectedly fine with the transition however I recently read that typical burnout point is mid Y8 for girls or for some boys who internalise and mask. I wonder if there is any way to minimise the risk of burnout if you can see the potential for it in advance? I burned out at 18 and had 2 years off before resuming higher education. It’s only now I realise it was an autistic burnout. Because I didn’t know this I had no support from the very prestigious university I was at and had to leave. DC is very good at masking and doing well in school with plenty of support from me with organisation but needs a lot of downtime to compensate for the effort it takes to spend a day with so many people who don’t want to talk about the current special interest.

I try and allow plenty of downtime and time for special interests. Don’t force situations I know cause stress but also I try not to allow avoidant patterns to set in. Is there anything else I can do or consider? We haven’t perused a diagnosis as school won’t support it and going private is too expensive when there isn’t a pressing problem we need to address.

@AutismProf Thank you for your reply. Good to know that she's unlikely to drown in the bath! I will try to negotiate a shorter time in the bath though (she definitely needs to do more homework!).

Hi @AutismProf , you might remember me from way back on the thread. I had the daughter who felt strongly she was autistic after watching A kind of spark. After speaking with you, I did reach out to her school and just came out with all my concerns. They have been fab, and whilst they admit they have virtually no experience with girls with autism, they feel that their eyes have been opened and they actually did offer to refer her themselves once they had processed and started to document all the difficulties they have been helping her with for some time. However, they feel a private assessment may be the way to go if we want the assessment before secondary. We, as parents, are still very torn though. Whilst she has repetitive behaviours and sensory issues in spades, socially, I'm not sure there's enough there to warrant a diagnosis. She's an extrovert for a start, so very much enjoys a captive audience. She is social in that she enjoys company, and tries to make friends often. The school have said she enjoys playing with much younger children, as opposed to her peers, (she has just one special friend her own age who's been her bestie since reception). But she can get along fine with girls her own age in short bursts, makes good eye contact and actually seems very astute when it comes to being able to interpret people's emotions based on their facial expressions, for example. She does struggle to understand sarcasm / jokes that aren't immediately obvious like 'knock knock' and her teacher has said she's very literal, they often have to explain things for her in a very black and white way, but I'm not sure if this is the social side. I know you cannot possibly say, but I guess I'm just wondering whether someone that is probably doing ok socially (currently) is likely to get a diagnosis with all that being said? I have reached out to a well respected (NICE guidelines etc) assessor in our area really asking that same question, but so far haven't had a reply.
Privately, we have felt she is neurodivergent for years, but there seems to be no one we can access to just bounce these ideas off of without going straight in to assessment level. I'm sorry for the long post. As I said, we are in total knots about all this and have no one I can ask (who knows anything!) so I am just reaching out to people and throwing myself on their mercy, hoping for a reply somewhere!! Thanks if you made it this far

@hotfairballoon take a look at this. Girls are sociable and chatty with eye contact, mine was. Shes still ASD though.

https://autisticgirlsnetwork.org/keeping-it-all-inside.pdf

@hotairballoon

I don't think I can answer your question.

The diagnostic criteria do specify that the symptoms should be having an impact on someone's life- the rather non neuroaffirmative language of the icd11 says as follows:
"sufficiently severe to cause impairment in personal, family, social, educational, occupational or other important areas of functioning and are usually a pervasive feature of the individual’s functioning"

I have 2 neurodivergent kids myself, one diagnosed and definitely needs the diagnosis and adaptations to expectations on him. My other lad thinks he probably is as well - but we have never pursued diagnosis because he has never been in conflict with his environment. He has happily met all academic expectations on him, has a great group of (mostly, but not entirely) ND friends, is developing independent living skills etc. I have in my back pocket that we will pay for a diagnostic process if he wants us to (he's now 17) and just recently he said he'd like to find out so he's currently filling in some forms.

There will be people on here who would say it's vital to assess early on, and where there's a clash with environment that is certainly the case. The worry with girls is that transition to high school is a common flash point for failure to cope. So there's a dilemma. In your daughter's case the literal language and black and white thinking are small red flags for secondary school curricular expectations, for example, whereas my son has no trouble with that sort of thing, but is a bit socially gauche and occasionally doesn't think to ask for help with things (eg will tell me his ear is discharging and when I ask if it hurts he will say "yes", I ask how long for and he says "3 or 4 days"!)

We shouldn't really be diagnosing people who are a bit quirky but live in an NT environment perfectly happily. The flip side of that is what I mean by "perfectly happily". I don't mean cope in that environment with a great deal of mental effort and then collapses at home. My eldest did that for a while and ended in burnout. My younger boy doesn't need that "recovery" from being in NT land.

Thank you @AutismProf for you reply. My daughter is struggling at school and her general life experience has been deteriorating for the last 18 months. There are lots of meltdowns at home, huge issues around anxiety and sleep, and a lot of upset around school. However, she's very compliant so despite not wanting to go to school, she will. She has good days, even weeks, then we can have a period of low mood and upset. I guess it's just knowing when is it the right time? We can't afford to do it twice. I'm asking impossible questions though, and I appreciate that. Thanks for your time

This is such an interesting ‘take’ @AutismProf I’m in my fifties, diagnosed last year. I have always worked, have navigated higher education and life is generally ok. In DSM terms, I’ve ‘low support needs’. I struggled epically at school, which was ghastly, and left emotional scars, but I’m resourceful and, looking back, made a few lucky/canny choices. I don’t know if a diagnosis earlier in my life would have helped or hindered, especially with the education system back then. An educational psychologist once told my parents he thought I’d ‘always have problems in relating to people’ when I was all of eleven. I pursued a diagnosis for my peace of mind and to help me understand my history and family dynamics.

Hi AutismProf! I'd love to be an autism Prof :)

What route do you recommend in?

I currently teach families about autism and love all your posts on here. I often use Neurowilds resources and love learning more. My kids are autistic and I realise I likely am.

However my background is teaching so I can't ever apply for the OT/social work/mental health roles that seem to need any of those professions.

I'd originally wanted to be a clinical psych (1st in psychology) but went on to teach psychology...

Do they welcome people in late 40s? I was thinking I need to qualify as something in order to find a way in?

Hi lotsofballoons

In theory with your background in teaching and lived experience - and psychology degree - you could apply for the ed psych doctorate. You would be on the older side on the course cohort, but if you qualified at 50 you'd still have 15 years at least to practice?

Otherwise you could do some kind of masters level training in autism and move into autism specialist advisory teaching roles? Places like the autism education trust, or NAS, or in fact many LAs have advisory teaching services?

interesting thread but sadly not addressing my issue

@Breakfastbars sorry, I did miss a lot of posts. The thread was so busy and I couldn't keep up, then I wasn't actively on Mumsnet for a while.

I read your posts and can't really answer.
It could be that your ds simply had a language delay. However it sounds like he had what is now called "natural language development" (not a great name for it) where speech develops in blocks, top down rather than bottom up. This is more common in ND children. Organising schemas (such as lining up pebbles) aren't exclusive to autistic children. It depends how much they dominate play and whether the child is able to accept someone joining them in that play, adjusting the pebbles, adding a few, that sort of thing.

If he'd not had such an early assessment maybe he wouldn't have been diagnosed, who knows.

I have a family member like this - started speaking in full sentences very late, appeared quite asocial as a child, had a soft toy comforter they carried everywhere until about age 10, would almost certainly have been diagnosed autistic if they presented as a child now how they did back then - now apparently a completely OK adult in their 40s who has never had any significant difficulties in work or life that looks like they could be down to autism.

I guess as he's now an adult he can choose to get reassessed, or he can just let the diagnosis lie dormant. He need not disclose it, after all.
There is some research evidence that a small number of people can be no longer diagnosable in adulthood, here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547539/

Hi @AutismProf, I'm probably going to ask an impossible question - what my DS who is just 5 will be like in the future. He is ASD with an EHCP for 121 but in mainstream school. He is verbal but not very communicative but well ahead with numbers, phonics and photographic memory for words. Fine motor and gross motor are fine, good at puzzles and Lego. Late to potty train and still some poo accidents that don't bother him. No big sensory issues, eats fine and sleeps ok. He's definitely very emotionally behind and it's like having a 2 year old in terms of how he reacts to being told no (eg no you can't have a chocolate bar, no you can't climb in the front seat while I'm driving) - not awful behaviour but very toddler like and he's a strong 5 year old. Not interested in his peers but enjoys his siblings. He's calm and happy and very friendly with people, but I just can't imagine having a conversation with him that wasn't a one word answer or a quote from a book that I'm not sure if he understands or not.

I just can't work out if he will perhaps teach himself to speak from reading and that lots is going into his brain despite not much coming out of his mouth, or if he's pottering through life without much interest in the world outside numbers and letters, and isn't taking much in. My old son is more Asperger's ASD and had various different issues at 5 but if I could've known then how well he'd be doing at 7 I would have worried so much less.

Sorry this prob isn't fair to ask but what are your initial views on what he might be like in say 3 or 5 or 20 years? We get private therapies for him and the school is fab with him so we're trying to do everything we can for him.

My ASd Dd still carries a comfort toy with her everywhere!

You're right, I can't answer.
It partly depends on whether his skill areas in numbers and words are purely rote (like a visual echolalia) or comprehension based. If it's comprehension based there's a higher chance of him making the progress across the board. It seems hopeful that he appears to have strong language comprehension.

Don't be afraid to consider a more specialist setting if he shows consistent signs of increased distress in mainstream, would be my advice. The mainstream curriculum is so hard and pacy at primary level now. Of course he may never struggle, but be wary of the 1 to 1 masking that he can't access the teaching.

Thank you @AutismProf, I knew that you likely wouldn't be able to answer. I guess it's just too early to tell while he's so young and in Reception. He seems very bright in some respects, and I don't think it's just rote learning I just can't picture what's going on in his brain when he figures out things (eg a tricky Lego piece) or reads books/watches tv etc. What sort of conversation is he having with himself when he says so little out loud.

Need to take the positives of how loving and cute he is most of the time and focus on that to give us hope for his future.

Hi @AutismProf
I would love to see what you think here
I have 2 children. A daughter that is 3.5 years old and a son 2 years and 3 months old.

We are bilingual and have had history of speech delays in both our families.
So my daughter started nursery at age of 19 months and she was speech delayed. Now she is 3.5 and she is blooming. She is learning and learning both languages and she is very smart and quick learner. She also can a bit of English ( English third language). She speaks in sentences now thankfully. She is social and has friends in the nursery now especially when she moved class from 3 years and up.

My son is now also speech delayed. And he also started at 18 months and was only subjected to one language. Suddenly he got introduced a second language that he doesn't recognise.
He is a happy boy and plays with me, his dad and sister. When uncle's are over he plays with them with no problems. But at nursery they say he doesn't communicate with other children. He has eye contact when he wants to and turn his head when he hears his name ( but not always, depends if he is busy with something, maybe poor eye contact? ). Bangs his head when he is frustrated. He doesn't have any repetitive behaviour though.
He was subjected to o lot of tv wince he was as born which I know isn't very good.

@AutismProf have you come across areas wanting parents to have been on a "parenting course" before referral.

I'm finding parents are being told this then having to wait months for triple P or incredible years which in turn isn't overly helpful and then another thing to have failed at before getting referred and the the 2 year wait...

@AutismProf. I was wondering if you might be able to recommend some reading/resources regarding ASC in older teen males and friendships + relationships. Whilst in general we observe that girls like to have friends and rely on their social network, it seems males have more of a 'take it or leave it' approach, and don't work on those relationships, but seem fairly happy to go along with them if someone else takes the lead. I'd really appreciate some reading around this in relation to older teens, like 17/19. Thanks.

www.theengineshed.org.uk/north-east-london/ menssheds.org.uk/ @Toddlerone might be useful resources, if there's anything near you?

Hi to recent posters.
I have seen your messages. I am in bed with a chest infection 😭 and not up to answering today but I will come back asap.

@AutismProf
Feel better soon!
💐

Hi @AutismProf
I hope you feel better soon.
I am waiting to see if we get an ASD assessment for my 6 year old girl but she masks at school. There is autism and adhd in both sides of our family and I know there is something going on with her daughter as she struggles at home and shows her true self. This has come from what the school completed, can I get your thoughts on if you think this is a sign of masking as some areas she is way below and some she is way over. Thanks in advance.

This is hard to answer.
Bilingual from birth children do tend to start speaking a little bit later than single language children.

But you say your son, unlike your daughter, only had one language from birth, but there's also a history of speech delay. He then entered nursery where they speak a language previously unknown to him. In nursery he isn't playing with children or communicating.

We know that children do go through a "silent period" if placed in a new language environment. If they are little, this can be quite a long time - several months. However you would hope to see the child joining in, playing etc apart from not speaking. The head banging sounds like he is getting quite frustrated and upset too. This could be because of his speech delay and new language environment, or it could be a sign of something like autism. It's probably too soon to tell. I would be asking for his key worker to have a dedicated 10 minute playtime each day with him in a quieter room, where she can model language to him while having a nice time playing whatever he likes to do. Centre it around the things he likes doing anyway - eg if he likes the trains best, spend 10 mins playing trains together. This should help them begin to get to know him better and see how his social interactions develop and whether he begins to speak in that low pressure setting.

I don't think at this point anyone could say for definite either way what will happen, but they can see that right now he's not thriving, so they need to intervene more.

Since COVID most referral pathways are absolutely drowning in referrals - many have quadrupled referrals or even more. Because of the ever higher waiting lists a lot of areas are trying to do things to help parents manage during the waiting list period. We do know that in some cases, younger children are presenting with behaviours that might look like autism but are actually related to limited interaction with peers during COVID at a critical age of development.

I don't think making parents do a "parenting course" is especially helpful but it might be linked to this? In many areas they are adopting "neurodiversity profiling" which started in Portsmouth. It's another attempt to help parents and schools identify and meet a child's needs during the inevitably long wait for diagnosis.

What is it you are looking for ? Something for the YP to read themselves, or something for families/ profs to help their understanding?

I have (now) 2 autistic sons, one is very much as you describe, delighted to see his friend but relies entirely on him to make the running. Mind you, friend is also autistic but is more proactive! The other, whose communication is less impacted overall, has a group of ND friends who interact constantly and mutually, based around gaming initially but now great friends IRL, visiting each other, going to gigs together etc.

So I suppose there's quite a variation of presentations.