Recs for a doctor to help with ASD?

[Apricotton]

Hi, my child is Autistic. I’m looking to book an appointment with a paediatrician for advice on how to manage various ASD related issues. We aren’t after diagnostic services- she’s been diagnosed already. Does anyone have any suggestions? London/ SE area, but can travel. Thanks.

Are these medical issues or behavioural? Unless you’re looking for something like melatonin or AD’s then I’m not sure a paediatrician is what you need. Happy to be corrected though.

I am potentially looking for melatonin. Sleep is one problem. I also have a pile of behavioural issues. I don’t know what to do.

Presumably you’ve approached your GP about sleep and no support? How old is your dc?

My dc is 4. I have approached the GP and was told she couldn’t prescribe melatonin and wasn’t offered any help.

You do need a paediatrician to approve melatonin and then the GP should be able to prescribe it under shared care arrangements. You can ask GP to refer to a sleep clinic but that is all likely to take time.

Hopefully someone will be able to give you specific recommendations but if not then check your local Nuffield or Spire for private paeds.

Regarding behaviour the best approach is probably reading widely (books and online) and podcasts based on your child’s specific profile. There are tons of recommendations on these boards. It honestly depends on whether your child has sensory issues, pda profile etc.

Apply for DLA and an EHCP, these will both help.

Thank you, your replies are really helpful and appreciated. I will read further on these boards for suggestions. I’m just so overwhelmed and worn down by it all.

Not listened to a podcast before, but I’ll look into it.

My dc has an EHCP and DLA, but thanks for mentioning these.

Getting provisions like SALT, OT, play therapy or music therapy etc. included in the EHCP can be beneficial.

In terms of paid support these are the things we’ve tried:

SALT - helps with speech, attention, developing relationships, emotional
awareness. We struggled to find a good fit privately. Hanen books are very good here too.

OT - Gross and fine motor skills, emotional regulation, sensory integration (if qualified). We had one that went into school, she was great. Lots of OT books - balanced and barefoot etc. plus out of sync kids books for sensory issues.

Educational psychologist - to help with school refusal issues. She did not support ds as this was during covid but it was advice for me.

Play therapist - to help with anxiety/school refusal. I’m not sure this was helpful but we perhaps didn’t give it long enough. He’s having play therapy at his special school now which is going better. I think she’s a better fit.

RDI consultant - for general advice. This was quite useful. She directed me to the books The co-regulation handbook and the declarative language handbook.

I second support via the EHCP. If DC has an EHCP, support (e.g. SALT, OT, MH input e.g. play therapy/clinical psychologist/animal assisted therapy), for the behavioural concerns can be part of that. What support does the EHCP currently include? Sounds like an early review is needed.

If you wanted to go private for melatonin, Evelina has a excellent NHS sleep clinic. It would be worth asking whether they have clinicians working privately as well.

Thank you both for your responses. Her EHCP includes OT and SALT. She saw an Ed psych as part of the EHCP assessment process and made suggestions for the EHCP. I’ve got a Hanen book, but didn’t find it helpful.

My dc is non verbal and nothing seems to work. I’m not convinced that the EHCP is that great, but I do think her new nursery is good. Because of the summer holidays and change in nursery, I think it’ll be a while before her EHCP is reviewed. I think I’ll seek the nursery’s opinion on when a review would be sensible.

Theres no play therapy. She’s at nursery (delayed her school start). She didn’t get accepted to a SEN school.

I will look at those handbooks suggested, thank you. The sleep clinic sounds good - I’ll look at that.

You can request an early review of the EHCP. On their website IPSEA has a model letter you can use. The provision in the EHCP needs amending if it isn’t meeting DD’s needs. Did you appeal the SS refusal?

My dc is non verbal and nothing seems to work. do you mean nothing works to encourage speech or to help other behaviours?

Review of the ECHP should at least be annual.

Thanks for your response. I didn’t appeal the SEN school refusal. I didn’t know I could. The LA said that all the places went to ‘more severe’ children. I am looking to get her a place at an ASD centre attached to a school.

im not sure a review of the EHCP would be helpful at this point - I think it makes sense to wait a couple of months and see how she gets on in the new setting. In truth though, I feel totally out of my depth.

Nothing works to encourage her to become verbal. I think she is capable. I’m just ready to tear my hair out/ things are getting so much harder. Sorry for being a whinge bag.

I do t mean to sound unkind but this makes no sense to me. If she could do it, surely she would do it? Why would she purposely not talk?

Don’t be sorry, we all need to let off steam sometimes.

Maybe I’m deluding myself. She has said words in context before, but it just happens so incredibly rarely. That’s why I think she’s ‘capable’ but I do get what you’re saying. And it’s hot and my brain is fried!

Regressions happen and, of course, there is selective mutism though I don’t know what the threshold for this is. What did the SALT say? SM is anxiety based.

Thanks for your reply. Her SALT is lovely and tries her best. She hasn’t suggested selective mutism. I don’t know if/how much anxiety my dc has.

This is just from a quick google

https://parents.actionforchildren.org.uk/additional-needs-disabilities/understanding-additional-needs/autism-anxiety/

If you feel like she might be anxious Luke Beardon has a book called Avoiding anxiety in autistic children. He is well respected.

Many autistic children suffer from higher levels of anxiety than NT children, it’s very common. Especially with a typical authoritarian parenting approach. Remember that all behaviour is communication, that often our children don’t do things because they can’t or because it’s too hard for whatever reason. Typically their emotional development lags behind their chronological age.

I really like the book 10 days to a less defiant child for explaining all this. The Tilt parenting book is also a great perspective shift when you have a ND child.

That’s fantastic, thank you. I will look at all the suggestions. Real food for thought, particularly related to anxiety. I’ve not really explored that properly before in relation to my DD. Thank you so much for your help.

The letter when the EHCP was finalised should have informed you how to appeal. If you want a SS or the ARP and the LA refuse appeal to SENDIST. The majority of appeals are upheld. If DD is moving from nursery to school next September there should be a review held this term anyway because the EHCP naming next September’s placement must be finalised by 15th Feb.

Thank you for your reply. The school/nursery situation was decided on after my EHCP was finalised. It was finalised naming my child’s (then) current nursery and later updated.

I don’t know if the SEN school would be for the best as I was told that DD isn’t ‘severe’ enough. I’ve been told that panel meets in February. I will push for a review for later this term, thank you.

After the EHCP was finalised and then again after it was amended you should have received a letter informing you how to appeal.

What do you think about special school? Look at all that might be suitable (mainstream, specialist including out of area and independents, ARP). Don’t listen to the LA, make up your own mind on what your preference is.

Thanks for your reply. I’ll do as you suggest and look further at the options, including further afield at options.

Out of interest are there any podcasts you would recommend (autism, sensory even dyspraxia maybe)... appreciate the point it depends on what you are looking for and your dc needs but I do sometimes wonder if in my cherry picking I miss something that could help

I like Tilt parenting, though her ds has ADHD not autism but she talks about a variety of stuff.

There’s an OT one called sensory wise solutions.

Kristy Forbes has one called Intune pathways. She is pda autistic with the same profile dc.

Lots of these podcasts have guests who have podcasts or books and you can follow that trail if it resonates.