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!

Thanks @Singleandproud Eels are still very much on the agenda 😀I found your recent post resonated with me @AutismProf , I think DD(14) is most represented by your second paragraph, in that she had become overwhelmed by just getting through the days at school. Now that school are aware we are working on the slow process of relationship building with trusted adults at school - as previously she would always say she was 'fine' if any teachers asked her (even if in distress), and then we would have the fall out at home. It's taking a lot of patience, but I have been amazed at her in the last couple of days, she voluntarily cleaned her room and got her school bag ready, I had deliberately not mentioned any of this preparation and so the motivation has all come from her, which in turn has helped her confidence.

@Righthandman Yes it may well have been something like that.

Hi
just wanted to get your views on whether the possible following symptoms could be a sign of autism or some other health related issue with an 18 month old:

• limited eye contact
• Regression with crawling. Started at 12 months stopped and started again at 15 months.
• not walking yet.
• no cooing or babbling.
• limited speaking (handful of words, often repeated once said by an adult).
• asymmetrical crawling.
• limited pointing and very limited waving.
• not reacting to social interaction like peek a boo or incy wincy spider.

I’d like to ask about burnout.

My Dd dropped out of A levels in March as she was exhausted. She kept trying. But now we know it’s burnout. She’s beyond exhausted. Sleeping all the time. At one time she was struggling to speak. We think it’s been going on since y10.

Ahes sleeping 17/18 hours a day and still too tired to do anything. Will this go eventually?

Hi Drayton.
I am not an early years prof and wouldn't like to hazard a guess. There are lots of things - language disorders, developmental delay, deafness etc - as well as autism, that could cause these issues. It would be sensible to see your local health visitor and request a peadiatrician take a look at your child, as it does seem like there is some delay and atypical trajectory to some of their development.

There's a new app called "AS Detect" that is free to download and has little videos to show typical and atypical development in babies to support earlier identification of autism in those under 3. It might be helpful to have a look at it?

Ah, poor thing.

She needs rest and low demand. Access to her special interest. As you know, a different approach to the "fake it til you make it" approach for depression. Has she had any medical or psychological support?

My experience of my own child was almost identical. It has taken a long long time, and he isn't back where he was before the crash, but he is a great deal better than he was for several years. I won't lie, it's been 3 years.

I do think burnouts vary though, in depth and length and severity. An autistic colleague seems to only need 3-4 weeks, but perhaps as an adult they have got better at recognising early signs - plus of course they have the autonomy to step off the bus when they need to.

If you haven't already done so, get yourself identified as her appointee, apply for pip and a social care assessment. She will probably be entitled to a care plan and PA support (she may not be ready yet, but these things take months).

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?

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?

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?

Drayton - It heavily research based and claims accuracy rates above 80 percent in the early detection of autism. Disclaimer: I have not personally tested its accuracy or checked out the research base!

A PA is a personal assistant - yes - but the terms of what they do is much wider in social care. Things like, going out to a cafe or swimming or taking someone to the shops or whatever is included on the care plan.

I would think about working with her on one thing of her choosing between now and Christmas. Something like "I will buy a pack of cards and write Christmas cards for these 5 people, and post them" or "I will go to McDonald's on Tuesdays and buy a meal with my pip money" or whatever she wants. Help her ensure its achievable.

That's lovely news. I am so glad. She needs to pace herself. Ensure her day is structured and peppered with things that bring her peace and joy (special interests are great for this).

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

@Motherof2nannyof4
That's a difficult one. Other than raise your concerns with the parents, and be there for them, I don't think there's anything you can do.

However wrt your and your husband's relationship with him, as a person with an autistic child, please do not take any of his behaviour personally and say this to your husband too. My MIL invented a series of beliefs about my son - he "didn't like her", I was mollycoddling him which was why he didn't interact much, I was an overbearing mother which was why he didn't interact much, he was rude, he hated her....all if this severely damaged their relationship and our relationship. The fact was, he was an autistic little boy who was not comfortable with most people and didn't "perform" the way she had hoped and dreamed. It wasn't anyone's choice or anyone's fault.

Love him as he is.

@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?

@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?

@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.

Hopefully, the school has included more information in their referral as to why they feel an assessment is merited. As to where you would go if he isn't accepted, you would need to ask the people making that decision if they would refer him elsewhere that they feel more appropriate.

You ask how commonly actually autistic kids are refused NHS assessment. I don't know. However, usually the team only has the referral info to make that initial decision on, so it has to be good - sound, detailed, clear about main concerns.

Most pathways are totally swamped post COVID with referrals increasing substantially - up to sevenfold in large urban areas - so I wouldn't be surprised if they unfortunately tighten up on who they see just as a means of survival.

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.

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!

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 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

@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 @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!

@CatSighs
Reportedly about 4 percent of autistic people without LD have epilepsy - the stronger association is where a person has learning difficulties as well.

This seems like a remarkably specific anxiety that is very unlikely to happen. However one could see other issues with reading in the bath for ages after school - hogging the bathroom, having no time for homework etc.

As she gets older could you negotiate a compromise - half an hour in the bath, then half an hour in the bedroom, comfy clothes on or something? And a knock and check every ten mins in the bath?