I am an "autism expert". Ask me anything.

AutismProf · 2023-05-18T20:18:27+00:00

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!

Vittoria123 · 20/05/2024 14:38

Hello
Sorry for the long post but I’d really like some advice on my DD . She is currently 15 months . She has started walking at 12 and currently she has 15 words under her belt . She smiles at people and wave at them . She also imitates what she sees on tv and the peak aboo game . When she is out she loves kicked her ball and run on the sand and grass . My main concern is that she is a disaster with food unless I feed her . She does a bit of toe walking and still a bit of stimming like twirling wrists and flicking if tired or excited . I am a first time mum and very anxious . I’d like to know if there is anything I need to address or if it is completely normal for her age .
Many many thanks ☺️

Original poster

AutismProf · 11/05/2024 09:03

Smooshybonbon · 07/05/2024 09:37

@AutismProf i came across your thread whilst searching for advice. My 3.5yo is awaiting an autism assessment. We moved him from nursery to montessori pre school at 3 and after 4 months we withdrew him because they couldnt cope with his "violent outbursts, destructive behaviour" - he was very withdrawn during that time, at home also we experience the same behaviour, something which had been happening for a long time. We think that he struggled being in a bilingual environment and wondered if the class size was too big, too overwhelming. We experience alot of "its too noisy, too bright, too windy, smelly etc", also likes taking his clothes off at home or soft play, likes to be naked. He really didnt want to go to the school and would fight every morning. So we moved him to a small English school (only offers part time hours) and he loves it, hes like a different kid there and at home. He really is happy and thriving. Its all in English and there are only a maximum of 6 kids in his class, 2 teachers. So now apart from the odd meltdown, food fussiness and sensory issues he seems fine.
Heres the dilemma, we have provisionally enrolled him into an English preschool from Sept because we wanted full time 9 to 3 soni can go back to work. But the class sizes are much bigger 22 kids. On one hand i think well hes happy now dont move him, doesnt need to officially start school until next year but the current pre school is part time so only offers this year, when he turns 4 he has to leave anyway. Or try him in the new school and see how he goes? Its all in English with a big focus on play. I suppose im wondering if he would benefit from a year just being happy where he is and in a years time better able to communicate and manage his frustrations? But if anything crops up from his assessment it may impact him when we apply for school next year. We are overseas so we want him to go to an international school not public as the language barrier adds to his frustration.

I would leave him where he is happy as long as possible, and get a transition plan up and running for moving to a larger school. A school that would refuse a place to a diagnosed autistic 4 year old on principle isn't going to be the right place for him anyway.

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Smooshybonbon · 07/05/2024 09:37

@AutismProf i came across your thread whilst searching for advice. My 3.5yo is awaiting an autism assessment. We moved him from nursery to montessori pre school at 3 and after 4 months we withdrew him because they couldnt cope with his "violent outbursts, destructive behaviour" - he was very withdrawn during that time, at home also we experience the same behaviour, something which had been happening for a long time. We think that he struggled being in a bilingual environment and wondered if the class size was too big, too overwhelming. We experience alot of "its too noisy, too bright, too windy, smelly etc", also likes taking his clothes off at home or soft play, likes to be naked. He really didnt want to go to the school and would fight every morning. So we moved him to a small English school (only offers part time hours) and he loves it, hes like a different kid there and at home. He really is happy and thriving. Its all in English and there are only a maximum of 6 kids in his class, 2 teachers. So now apart from the odd meltdown, food fussiness and sensory issues he seems fine.
Heres the dilemma, we have provisionally enrolled him into an English preschool from Sept because we wanted full time 9 to 3 soni can go back to work. But the class sizes are much bigger 22 kids. On one hand i think well hes happy now dont move him, doesnt need to officially start school until next year but the current pre school is part time so only offers this year, when he turns 4 he has to leave anyway. Or try him in the new school and see how he goes? Its all in English with a big focus on play. I suppose im wondering if he would benefit from a year just being happy where he is and in a years time better able to communicate and manage his frustrations? But if anything crops up from his assessment it may impact him when we apply for school next year. We are overseas so we want him to go to an international school not public as the language barrier adds to his frustration.

Toddlerone · 27/03/2024 16:35

Thanks @AutismProf. I'd be interested in resources for professionals that support ND teens.

Original poster

AutismProf · 26/03/2024 14:25

Toddlerone · 24/03/2024 09:05

@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.

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.

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Original poster

AutismProf · 26/03/2024 14:19

LotsOfBalloons · 18/03/2024 18:48

@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...

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.

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Original poster

AutismProf · 26/03/2024 14:15

sunshine199103 · 18/03/2024 11:18

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.

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.

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MadHouse24 · 25/03/2024 15:09

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.

I am an "autism expert". Ask me anything.

Toddlerone · 25/03/2024 09:00

@AutismProf
Feel better soon!
💐

Original poster

AutismProf · 24/03/2024 20:49

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.

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Phineyj · 24/03/2024 12:29

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

Toddlerone · 24/03/2024 09:05

@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.

LotsOfBalloons · 18/03/2024 18:48

@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...

sunshine199103 · 18/03/2024 11:18

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.

GrandmasterGlitchsMoustache · 02/03/2024 13:16

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.

Original poster

AutismProf · 02/03/2024 12:19

GrandmasterGlitchsMoustache · 29/02/2024 19:20

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.

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.

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ArseInTheCoOpWindow · 29/02/2024 19:34

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

GrandmasterGlitchsMoustache · 29/02/2024 19:20

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.

Original poster

AutismProf · 18/02/2024 09:37

@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/

Optimal Outcome in Individuals with a History of Autism

Although Autism Spectrum Disorders (ASDs) are generally considered lifelong disabilities, literature suggests that a minority of individuals with an ASD will lose the diagnosis. However, the existence of this phenomenon, as well as its frequency and in...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547539

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Breakfastbars · 18/02/2024 02:03

interesting thread but sadly not addressing my issue

Original poster

AutismProf · 13/02/2024 20:26

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?

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LotsOfBalloons · 13/02/2024 15:55

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?

Craftycorvid · 11/02/2024 22:29

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.

hotfairballoon · 10/02/2024 16:07

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

Original poster

AutismProf · 10/02/2024 15:53

@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.

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