To request ASD assessment?

[Hogi]

Hi all,

Long one and SN children is kinda dead so I am shamefully posting here for traffic.

My lovely son is two years old and from about six months old I felt like there was something wrong with him (that sounds awful) he wasn't meeting milestones, he wasn't doing things the books said or things I'd seen other baby's do and I was worried.

I was told off medical professionals that baby's all develop at different times, boys are lazy blah blah blah they normal things they said which is fair enough, they weren't wrong but I knew in my heart something was wrong.

At 16 months I took him to the GP because he wasn't walking or even attempting to and they referred him to a neuro paediatrician. We went to the paediatrician and he sent off some blood and said he wasn't sure about ASD, let's give it six months.

After this appointment we had portage involved who put in place a specialist inclusion teacher and did say they wouldn't be surprised if he received a ASD diagnosis. We haven't yet seen the specialist inclusion teacher yet though.

Four months later we received an emergency appointment. They had found something wrong with him. He has a rare genetic disorder which causes development delay, intellectual disability and most have some features of ASD. A lot of children with this disorder are diagnosed with autism. He's heavily affected with his mobility and speech and language.

At that appointment he was diagnosed with the condition, GDD, hypermobility and low muscle tone so I asked about an ASD assessment and he advised he'd need evidence such as letters from other professionals. He pushed back basically which is fine I understand but he also said he wouldn't be surprised if my son was diagnosed but wanted to wait until he was five. I personally don't want to wait until he's five as early intervention is so important plus if we wait until he's five then he may not be seen until he's 7 or 8 and may need support before then.

So anyway this month all our appointments have come through. We had a phone call with the geneticist on Monday and the have said they strongly recommend an ASD assessment because of his diagnosis alone so will send a letter to the paediatrician. On Thursday we had his physiotherapy appointment and we didn't mention ASD to her as I didn't think they could help and she spent 10 - 15 minutes with him and asked us if he was on the pathway to ASD and we said no and explained the above and she said she would write a letter/email strongly recommending an assessment. Today we had speech and language and I explained this to him as well so he said he'll spend some time with my son and if he feels he needs to he will send a letter/email for us, he spent an hour with him and at the end said he shared our concerns and if we hadn't of mentioned it to him then he would have been mentioning it to us.

We have our next appointment in September so would we be unreasonable to ask for the ASD assessment to be put through and if he still pushes back ask for a second opinion as we've done everything he's asked for?

If you have any tips about what other evidence we can gather, that would be great. I am going to ask the nursery as well but I am a bit concerned as he started three weeks ago and they've only just realised he likes to draw and mark make which is his all time favourite thing ever so I don't know how they haven't noticed haha (light hearted, nurseries have loads of kids to look after).

Can you go private? No hoops to jump through then.

I think that the GP is waiting because many of the ASD signs are likely to overlap with his other diagnosis but so will many of the interventions.

Have you looked at the diagnosis criteria to see if he meets them?

YANBU, and you shouldn’t get any push back now he is 2. They tend to just stick with Global Development Delay for under 2s because the diagnostic tools for ASD work better age 2+

Also the diagnosis isn't based on letters from individual practitioners it's done through an ADOS or Disco assessment (there's a toddler version)

Sadly not. The prices are understandably expensive.

I understand where he's coming from but there's a lot of traits which aren't caused by his condition such as regression in speech etc and if he is also autistic I would like him to have as much support as possible.

I feel he does meet the criteria as does the professionals who have seen him so I don't know really. It's hard to navigate and I just want what's best for him.

In an ideal world I would love if he had an assessment and they told me he didn't have autism as that's one less things to battle against as his condition causes enough issues for him but that seems unlikely.

It's frustrating because that's what the paediatrician asked for. He wanted letters from other professionals before he would consider moving forward.

I think that’s more to support adding him to the wait list for assessment. They prescreen before adding kids to the wait list for an ASD assessment and letters from HCPs or the school (if school age) get the child through the prescreening.

So I don’t think he was pushing back, he just didn’t tell you they don’t normally assess until at least age 2 as well as telling you gather letters as evidence of autistic behaviours and traits to support getting him formally assessed.

@AP5Diva

Thank you for your response. I did wonder if that was what he was doing but he wasn't very clear and it felt a bit like I was being ignored but I guess that's from when DS was a baby and I was being ignored a little bit so I just assumed I was being fobbed off again.

Now we have the other HCP involved writing letters do you think on our next appointment he may be a bit more willing? Or is it just a wait and see?

I just hope he doesn't keep changing the goal posts really.

This sounds incredibly similar to my daughter she has a rare chromosome deletion 15q11.2 also gdd, asd, hypotonia and about 8 further diagnoses. We were told she was most probably on the autistic spectrum aged just 10 months but wasn't officially diagnosed until aged 3 and one week as in our area they won't even consider diagnosing asd under 3. The most prevalent issue at his age will be the gdd my daughter is now nearly 8 and the mental age of 3 and has been working at preschool milestones the last 3 years she's my absolute joy. The best thing we did was researching all of our local nurseries and found the best one with sen knowledge and a senco so that we could ensure an ehcp was in place ready for school. She goes to a special school and is loving life xx

He should be more willing. Since your DS is over 2 and you have letters so it’s not just you noticing things.

That's lovely to hear she's loving life.

My son has the distal 16p11.2 microdeletion. We did some research on nurseries and honestly round here they are so fun so we went with a nursery where the manager has a stepson with the same condition as DS because then they have a lived experience of it rather than sort of reading it on goggle and guessing.

They seem to have an okay senco and he is meant to be having the specialist inclusion teacher visiting every term so I am hoping for support.

It feels like a minefield sometimes.

Amazing you found someone with knowledge it's a very bumpy road with the nhs and education system and fighting for the things they need, I was lucky as worked in the education and disability sector for 14 years so it prepared me a little for my daughter and the fight ahead, sounds like your doing well!! You literally have to be a royal pain in the arse to get the support they are entitled to ❤️

Yes you should push for an assessment.
You should also ask for a referral to OT if it hasn't yet been done, OT can help massively with the issues you mention.
if you can't access OT on the NHS, would you have the budget to do it privately? It's less costly than a full ASD assessment. And more practical help.

I don't know how it works now as my son is 13 but he was diagnosed with autism and learning disabilities at three so they absolutely can diagnose at a young age
But there has to.be substantial evidence for that
In my sons case it wss glaringly obvious
Obviously many children will be diagnosed much later but autism.presents differently in different children my son was diagnosed via a panel.after about seven months of assessments there is no harm in asking about it.

My son also has 16p13.11 micro deletion are you a member of Unique?

Will he be going to a special school? I think that your worried about a diagnosis in terms of early intervention is key, but no one can fix ASD and if he gets into the right educational setting they will look at his needs and behaviour and plan accordingly. Regardless of diagnosis.

the consultants don’t always like labelling on top of diagnosis already there as like you said many chromosomal conditions will have ASD traits and so they don’t want to Mis diagnose, especially if the child is able to get the right support in the right setting x

@x2boys yes we are part of unique thank you.

@Bubblegirly We're considering a special school but it's just how he develops and where we are when he's ready for school. At the moment he can't walk but physio have said they expect him to be walking in 12-18 months so he will be nearly 4 possibly by the time he's walking unaided. He's non verbal but we're working on that with SALT but they can't say whether he'll speak or not or how long it'll take so we are playing it by ear really and trying to take it at one day at a time. I don't really know how to get a ehcp really. It's all new to us and scary really so I am sort of relying on HCP.

I do understand that and the HV thinks his diagnosis is enough but I just think if he's also autistic then he'll need help with that too. I don't know, I just want what's best for him x

Sorry namechange fail, loving Taylor swift atm

His nursery should be able to help you with applying for an EHCP. It sounds like he needs one. I would always say to go straight for a special school as it’s really hard to get into one of you start in mainstream.

Again with the autism concerns the help you get will be covered by what you have mentioned anyway. SALT and OT input if required for any sensory needs but they won’t look at a diagnosis. They will look at the child and behaviours and support appropriately. If he’s in the right environment then these things will get picked up but no one will do anything differently so try not to worry. Hope that makes sense x

That makes sense actually so like rather than looking at diagnosis they'll deal with the symptoms he's portraying and offering support that way? That does make me feel better actually.

I think nursery have put 1:1 (at least a little) in already so I'm going to speak to his key worker tomorrow and ask about the ehcp.

Thank you x

You can request an EHCNA yourself. On their website, IPSEA have a model letter you can use.

Yes exactly it! And if down the line they think yes this is ASD then they can diagnose it but it won’t alter the support they get. Feel free to PM me any questions. I’m a medical professional based in special schools and have my own LO in a SEND school x