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

@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

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

@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!).

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.

Hi @AutismProf I hope you're still taking questions! I have an 11-year-old DD who has been diagnosed with autism. She's very bright and hyperlexic, early to talk etc - she would probably have been diagnosed with Aspergers rather than autism, if she'd been seen a few years earlier.

Anyway, I understand that autistic people are more likely to develop epilepsy than the general population. Does this also apply to people in the more "Aspergers" area of the spectrum, or is it more of a concern for those who have autism with learning disabilities? The reason I ask is because my DD loves to take very long baths. She's a keen reader and will read in the bath for ages after school - it's how she unwinds. But I'm really scared that she'll have a seizure in the bath and drown. As she's 11, she's a bit old for me to stay in the bathroom with her, and I have other children who also need my attention.

So far, she hasn't shown any signs of having epilepsy, but my heart is in my mouth every time she goes for a bath, and although I do call up to her from time to time to check that she's ok, she often doesn't reply! Am I worrying unnecessarily or should I try to find another decompression activity for her to do instead? Thank you!

@UniversalTruth it does sound then as if there is more nuance than ‘ok with eye contact, ok with friendships.’ I think if it were me and some of that detail wasn’t in the school report/hadn’t been mentioned to the doctor I would try to contact the doctor’s secretary and ask to give some additional info that had been missed at the appointment. I hope it all works out for you.

Hi we certainly do love him as is very recently he visited with mum and was a lot more smiley and giggly he loves looking at my rings on my hand turn ing my hand over back and forth so each time he did it i was saying wow and he giggled no eye contact but it was a great interaction
Thankyou for your reply x

I'm a 48 year old autistic woman (diagnosed last year) who is very close to being admitted to an eating disorder in-patient unit.
I would say make sure her autism is understood by those around her and she has time to regulate and be herself when life goes back to some kind of normality for her.

I'm pretty sure autistic burnout has contributed to my relapse of AN.

Hi @AutismProf, I asked this a while ago, but missed the reply or it got lost when this thread was super busy!

I have a DD, age 2 years and 8 months. Nursery raised concerns at the start of this year. These were mainly peer to peer interaction (lack of), hand flapping, tip toe walking, emotional outbursts and sensory sensitivities (although these have now massively improved). We have no issues with eating or sleep. She is able to navigate busy environments like soft play with no bother. She passed her HV two year review with no concerns. Speech isn't too bad, but I can't have a conversation with her. She has absolutely no concept of potty training (although I realise that at under 3, this can be normal). Socially, she's very shy (she actually said "I'm shy" the other day!) but interacts fine with us and her big sister. Have mentioned it to the GP, but they won't do anything til she's 4. Nursery can't do anything either apart from watch and wait. The lack of conversational speech worries me. I think a lot of her speech is echolalia, although she does use a lot of it in the correct context. However, if I say something like "What would you like to do today?", she can't answer. What should I be doing, if anything? Nobody seems to want to do anything, so I feel completely stuck. I don't want her to get to school then face years of struggling. Thank you!

Thanks @AutismProf. That's my thinking also, that they will likely be having to be tougher on referrals these days. It's a bit of a mess when you can't trust the NHS system to accept all appropriate referrals, but equally if you go private you risk not having the diagnosis accepted by LA and GP.

@Righthandman he struggles with eye contact under pressure - asking a question, when choosing something etc. The friend is very quiet, I don't know about diagnoses. They are both 8. They don't seem to speak much, they just hang out! We have noticed DS's interactions with grown ups can seem very formulaic and we told the doctor this.

@UniversalTruth how and in what situations does your ds struggle with eye contact? Is the friend an age- or year group - peer or is the friend much younger or older? Does the friend have a diagnosis or a suspected diagnosis? How do they interact especially compared to other friendship pairs of that age? Do they follow a ‘script’?

Those are questions I realised I needed to answer in between the referrals of my eldest, which was denied, and my youngest, which was put forward. If you have answers to them which you didn’t get to say to the doctor it may be worth contacting him to provide the additional info?

@AutismProf thank you for this thread.

My ds has been referred via school for an asd assessment. At the developmental history appointment (which we waited almost a year for) it was suggested by the doctor that because he makes some eye contact and has one friend that he might not be accepted for referral. He has violent outbursts at home which we are trying to deal with, but I can’t understand where we would go if he isnt accepted on the pathway.

How commonly do you think kids who are actually autistic get refused from nhs assessment?

Hi my new Grandson 16/17 months old 4th in family to my daughter has displayed unusual behaviour since 6 months with very delayed developement he still doesnt recognise his name or being held or walk on his own laughs inappropriatly doesnt point wave interact talk he blows raspberies stims spins things puts things in a box obssessed with feet and wheels cant feed himself my hubby and are very concerned as we have approached our daughter to discuss all she says is hes a lazy boy nursery havent reported anything she is under a health visitor i am also worried as she and her partner both have ocd what can i do to broach this to support them i feel she knows obvs with 3 other children her partner is a first time dad my husband is very upset as he cant interact with him the only time i am able to hold him is he faces away i jig him up and down and sing the wheels on the bus

Thanks Autism Prof,

just checked out ASD and looks good- wondered how reliable it is/ what level of accuracy it provides for those later diagnosed as autistic?

You kindly gave advice a while ago on my 17 yo DD (awaiting ASD assessment, but believed to be autistic by her CAMHS team) who is currently in an eating disorders unit after 8 general hospital admission for life-threatening complications from anorexia. She feels she started starving as a coping mechanism for the stress of masking her anorexia. In the last few weeks she has started to make really significant progress - she wants to turn her life around and beat the illness. If she can keep this up (and she is determined!), she should be discharged in about two months. I obviously don't want her to feel she must mask again - I had no idea she was autistic, until she became ill. How can the family and school make life easier for her?

She’s getting lots of psychological support. She sees a pyschologist every week ( on the NHS!) she’s got pip. What’s a PA? Personal assistant?