Private autism assessment

[lightandshade]

Hi,

Has anyone payed for a private autism assessment for their DC ?

I'm looking to go private for my DD aged 9 till now she has had no formal diagnosis but has received support from school, doctor and school are in agreement that she shows signs of being on the spectrum.

Until covid she coped well but since all support has stopped and she is struggling.

Looking at a couple of years for a formal NHS assessment.

My only concern is that if we pay privately it won't be worth anything ? Did your local authority, school etc take a private diagnosis seriously?

Thanks

Yes, though they might not specifically recommend any - it’s quite frustrating working in the nhs and not being able to recommend when you know that certain places are excellent and some are dodgy.

Take the advice about finding a service where the clinicians work in the NHS, then have a chat with them. You’ll get a feel for it.

Just to add that if your income is less than £45k, you can get a free assessment with Caudwell Children within 3 months.

@lightandshade

Wow so grateful for so many reply's.

To answer a couple some questions, out daughter has always shown signs since a baby, with things like, low eye contact, she wouldn't hold food , toys ect till almost 3 and that was through the support of portage ( not sure if they are a local service or nation wide ) but they helped her with her sensory issues, and provided us with tools as parents to support her and great progress was made.

Once she started school a report from th went with her and her school were great she had a quiet zone, extra support, equipment and she flourished.

As she's gotten older her ability to make friends became a worry and we were given the support of SAP ( again not sure if this is just local or not )

I never pushed or asked for a formal assessment and I seen all her needs were being met and felt she's was coping extremely well.

The last two year how ever have been extremely Tough, be that covid or age I'm not sure, we went back to the doctors who referred us to the NHS we got passed back and to from MH to neuro neither one keen to take her on and saying it was the other service that needs to see her,

There is now no SAP, no quiet place , no extra support in school and her mood has plummeted to a heart breaking level. She is now also noticing that she is "different " her words.

I'm embarrassed to say I'm now at a loss as a parent because it's got to the point that I don't no how to make her feel better anymore and I think if I can get her assessment sooner it will hopefully fast track her back into support and also I could get some help on supporting her,

We are not rich and have saved for the last year to be in a position to book this so I can't get it wrong, would it be a good idea to ask her GP for recommendations ?

Very unlikely an NHS GP would recommend....even if they wanted to. Where I am ( NW) the process for diagnosis starts with a referral to community paediatric but is actually a multi disciplinary decision made at panel after all investigations ( so involvement of school/nursery, SALT, Ed psych, OT etc as well as community paediatrics).... a private diagnosis would not hold any weight with regard to getting funding for school support

As well as pursuing a diagnosis you can apply for an EHCNA yourself, a diagnosis is necessary so you don’t need to wait. IPSEA have a model letter you can use.

private diagnosis would not hold any weight with regard to getting funding for school support

This is unlawful.

I'm in the NW and there are plenty of multi disciplinary services that provide a comprehensive diagnosis with professionals across the necessary areas like ed psych, SALT etc.

CAHMS have accepted this diagnosis in it's entirety.

Please stop and think before spouting off untruths.

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Look for a practice that has a multi disciplinary team, costs 2k and up for an ASD diagnosis, offers not just an autistm clinic but support for ongoing variety of conditions, has a full and written list of what assessments will be undertaken. Ask locally for recommendations, talk privately with people who have paid for the service and recommended them to you, ask how well the diagnosis has been accepted by relevant depts.

@lightandshade if you are wanting an assessment to make sure she has the right support at school then you do not need a formal diagnosis of autism. You need to speak to the school senco and find out of they think that she needs an ehcp. This DOES NOT need any diagnoses of anything to get. Even if the school don't think that she needs an ehcp, you can apply for one, it is just easier for the senco to do it as to they will fill out all the forms etc. It is based soley on how much extra support your daughter needs in order to access school at the same level as other kids. Getting an ehcp will probably take until about Feb 2023 if you start the process between now and June as councils often work in a cycle to get things ready for end of year school transfer dates. If your council don't have a backlog and are actually following the legal timeline then you could get one quicker.

@lightandshade if you want to pursue an NHS diagnosis then all you need to do is ask your GP for an assessment and they will refer you to the local paediatrician who will put you on the waiting list. You might be waiting a while, I think the waiting list where I am is up to two years. But some kids are seen earlier.

@lightandshade if you had portage when she was little then there will be plenty of evidence for the ehcp that she has needed extra support for a long time without an "official" diagnosis.

Get a private diagnosis while waiting for your NHS assessment to happen. The findings of your private diagnosis will hopefully help the process with the NHS. Also ask the school to get SEND/SENDAS to get involved/observe your child at school, they were brilliant for us and I've read other posters on here say they were brilliant for their child with ASD.

DS1 has ADHD and ASD diagnoses, privately assessed.

The private psychiatrist handed over care of meds to GP, no problems.

DS1 doesn't need an EHCP (yet, if ever), and his primary school have his diagnostic reports, which they base their IEPs around.

It's been really helpful to have the diagnoses; I would go for it.

Geneticsbunny if the LA breach the statutory timescales you can begin Judicial Review proceedings - often the mere threat works, but if not the pre-action letter is likely to awaken the LA. Using an excuse of a backlog or a cycle doesn’t negate the need to follow the law, as much as LAs would like it to. Unless the OP has to appeal, which I appreciate many do have to, some more than once, an EHCP will take a maximum of 20 weeks.

Btw, there are children in my class who have been on the CAMHS/NHS waiting list for over 3 years, and aren't getting seen anytime soon. The system is completely broken.

@Imitatingdory. Yes absolutely. Didn't want to scare the op with judicial review letters before she gets there but there are relatively quick and free ways of pushing things through if they get stuck in the system.

@GladysTheOstrich. They don't need a diagnosis for an ehcp though.

@Geneticsbunny Yes, I know. The children in question don't qualify for an EHCP because they are just about coping in school.

@GladysTheOstrich. Didn't mean to seem patronising. Obviously diagnosis is important for the kids own sense of identity and mental health too. I got a letter about a month ago from our local OT team saying they have two vacant positions which they are unable to recruit and are only dealing with urgent cases for the time being. The NHS is totally screwed from years of underfunding.

@RepentBirthingPersonFucker

I know a fair few parents who have paid privately. They have all got a diagnosis and, imo, that's why they are not taken as fact. They all paid 2-3000 to professionals who diagnose privately for their jobs. I find it hard to believe you won't get a diagnosis if you are paying for it

I asked the private team I used to assess for ADHD and they said they only do full neuro assessments. They said DC is Autistic and may have ADHD as well but will need to assess again in a few years. So I disagree that going private means you’ll always get the diagnosis you’re looking for.

@Geneticsbunny Agree - I'm genuinely frightened by it; it's privatisation by stealth. Get all the 'richer' parents to pay and leave the poorer children to the waiting list. It's creating a two-tier system in every school, whereby DS1 is getting help/support and medication, but my friend's (on the waiting list for diagnosis) daughter will transfer to secondary in September with nothing (and enormous anxiety). It's individual teachers who are taking up the mantle and treating children as if they have the diagnosis, because what choice is there?

Genetics bunny

With respect, that’s incorrect info you are giving to the OP.

We don’t accept GP referrals in our nhs service

@Malteser71 apologies. It is the route you go through in my bit of South Yorkshire. I should know better than to assume the whole country is the same. How do you get an assessment where you live?

@RepentBirthingPersonFucker

I know a fair few parents who have paid privately. They have all got a diagnosis and, imo, that's why they are not taken as fact. They all paid 2-3000 to professionals who diagnose privately for their jobs. I find it hard to believe you won't get a diagnosis if you are paying for it

So have you reported all the professionals who diagnosed children with conditions they don't have for professional misconduct? No? Thought not.

@PanicBuyingSprouts

Just to add that if your income is less than £45k, you can get a free assessment with Caudwell Children within 3 months.

If your child is between 4-11 and referred by a professional.

Our GP recommended a clinic where the staff also work in the NHS. The one thing I regret is not getting a diagnosis for DD sooner.

Genetics bunny- only school Senco can refer into our service

Malteser71 Referrals from others must be possible otherwise what about those EHE, below school age and where the school is blind think the child is “fine” etc.