Private autism assessment

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Hi

I have been thinking for a long while if I should I pay for my daughter to be privately assessed for autism. She is 3 and half years old and is very delayed for her age.

she is under speech and language therapy and we have been on the waiting list to be assessed for a year and a half now.

Has anyone had experience with private assessments and if so what are your thoughts? Would it be worth it ?

The service I am looking at will do an in-depth interview with us as a parents first, in clinic observation of my daughter, will visit her school to observe her in her nursery setting and will then conduct a panel meeting to discuss observations and findings.

Any advice on this would be appreciated.

We were going back and forth between going private but didn't in the end.

Apart from SALT has she been seen by others?
Educational physcologist?

You may get more answers on the SN boards

The SN boards are very quiet,
not yet I’ve asked for her to be referred for a paediatrician to see her from the neurological pathway team but as I was told today it’s a very long waiting list for her to be seen.
I need answers so I know for certain I think I know deep down if I was honest, so I can see what future she may have and what I can do to ensure she has the best life possible.

@Sunshineclouds11 did you get assessed and how long did you have to wait in total?

Three and a half is quite young still, children really do develop at different rates. I don't think I would go private on this at this stage.

But assuming she is very obviously autistic, what do you want out of the diagnostic process? The things that you can do to help an autistic child (like in your parenting style, or making her environment less overstimulating) you can start researching and doing now and seeing if they help.

Given how young she is Id be tempted to wait for CAMHS. Going private is hugely expensive, especially if follow up care or meds are required (though unlikely for your DD given age). The private clinic I used for my teen son is soon to be taking in clients referred by CAMHs to try and reduce the waiting lists.

She’s displaying a lot of behavioural issues in regards to being over stimulated, and she’s had development assessments done in private nursery and then main stream nursery that concluded she has a developmental age of a 6-11 month old baby.
She has other behaviours that show she maybe autistic as well, and I’ll be honest I’m worried sick for her.

I am already researching, and we have started a sensory room for her as well so she has a quiet space for when she’s overwhelmed and she has meltdowns.

My daughter was diagnosed at 2 years, 8 months. I think it was worth pursuing a diagnosis even at that age, because it meant we got input from professionals before she went to school - eg the local authority’s pre-school teaching team and autism specialists, so as well as helping her, it meant we had lots of a reports by the time she needed an EHCP for school.
I can’t comment on the private diagnosis, as ours was through the community paediatrician, but if the waiting list is awful in your area and you can afford it, I’d definitely explore.

I found the uncertainty was the worst. I didn't get a private diagnosis but if you can afford it then go for it. We had an 18 month wait for NHS diagnosis 8 years ago so god knows how long it is now. It'll give you some answers and can be used to support your NHS assessment when you finally get it.

@FortunataTagnips thank you for this, yes unfortunately it’s over 3 years to be seen by the neurological development team and it’s a long waiting list to be seen by a paediatrician from that team as well.
I just want some answers so I know for definite.

@takemeawayagain thank you for sharing your experience, it’s definitely giving me a lot to think about.

Yes, we only waited 6 months, 2 year ago. Not quite sure how we managed to get seen that quick tbh.

I understand the feeling of just wanting to know. If you can afford to go private and you're on a 3 year waiting list, I totally would.

If the money is not that much of an issue then sure go for it. If it could be spent on better things, then give it some more time. She will really need it when she starts school. That's when the accommodations are important. In the meantime, you can just say we are on the wait list for an assessment, but act as if you have it and its foregone conclusion. The only hiccup is if its not asd and some other developmental delay, but ASD traits are pretty consistent. Also dont worry to much, my asd son was so delayed at that age, couldnt do half the things the other kids could do, didnt say a word till he was 2, and now hes an A* student on a scholarship (still find friendships tricky though).

@SuperGreens thats so lovely to hear with your son I bet your so proud
Yes I’m slightly worried in case I have it done and it’s not autism but something else, but I think with how she is now alongside her additional needs and delay it definitely looks like she could be autistic.

I would pursue the independent diagnosis (just make sure the provider follows NICE guidance).

My DC was diagnosed at that age and it made things easier/clearer when we were talking to prospective primary schools about their needs.

Find out what a private diagnosis would be worth….in my trust it’s worth nothing more than a diagnosis…..can’t get an ehcp unless been down the nhs route. Unless you doing it to get DLA benefits? Then it might be worth your while

Hello OP, my DD was diagnosed privately at 4 years old after really struggling in reception. The school were hugely dismissive & a friend that had been through the process via the statutory route told me how stressful it was & to go private if we could afford it. We were already using neuroaffimative parenting techniques & found these made a massive difference to DD’s behaviour so we were fairly confident that she was autistic. We went with autism unravelled who are a charity I think. We still waited about 4 months for the assessment but I know that’s nothing in the grand scheme of things. They did a full MDT assessment & made a range of recommendations. Unfortunately the school were rubbish at following any of them & DD is now home schooled but I’m so glad we got the assessment done. It’s really helped us to make sense of her behaviour & our house is a lot more harmonious these days!

@Kitkat1523 its recognised by nhs health officials with the private assessment team.

I have been reading up about them most of the evening and it is recognised by the nhs.

I just want answers for my daughter and for myself

This is not true. LAs cannot lawfully refuse an EHCNA request because someone has an independent diagnosis. A diagnosis isn’t even required. And SENDIST considers all evidence.

@Peanutbutterfan thank you for that I’m so sorry to hear about the school not being supportive but I’m glad you were seen and assessed.

I definitely think it’s worth it, I’m going to give them a call Friday when I have a quiet day at home and go from there. It’s nerve wracking and daunting at the same time as I just want what’s best for my little girl.

Just to say ours has been recognised by the NHS & we’ve got an EHCP & DLA now.

Unless money is no object, personally, I wouldn’t seek an independent diagnosis at this point. I would request an EHCNA and save your money in case you need to appeal during the EHCP process.

But they find ways round it so by the time they get round to it it’s ages down the line and the child will be well along the nhs ASd pathway anyway….that’s how in goes in my trust and has for years

The LA can’t find ways around SENDIST. It doesn’t work like that. The wait for SENDIST is not as long as the wait for an NHS assessment.

You don't need a diagnosis for either a EHCP or DLA

I think whether a private diagnosis is accepted varies from area to area. Our NHS trust were more than happy to accept my DS's diagnosis and take him off the waiting list. Similarly the LA were happy to consider it as part of the evidence for his EHCP. I think the downside of a private diagnosis for us was that we didn't get much information beyond the diagnosis. However it probably varies a bit depending on the clinic and if it was that 3+ yr wait, I would go private.