To ask about private ASD assessment?

[mither]

Has anyone any experience of a private referral for ASD?

I don't know how (GP referral I guess) or where (Tayside) or who (same CAHMS team?)

We have been given some research at work which also suggests that Autistic behaviours in Pre-schoolers are very similar to behaviours from children who live in homes where there has been domestic abuse.

Yes, I think that’s quite widely known. There are differences between attachment disorder/exposure to early abuse and ASD, although they can present very similarly. There is some really interesting information in relation to this but I’m not sure what relevance it is to the OP!

OP, if you post on the SN board you may get some really good advice regarding private assessments in your area.

TheMonkeyMummy The whole of the UK isn’t the same.

My son was diagnosed within 8 months from my first convo with the HEalth visitor.

mrsdylanblue - I didn’t say you were an inadequate parent - and I don’t have any information whatsoever to make such a statement. I said, possibly a bit bluntly, that I didn’t think you understood Asperger’s as you referred to “mild autism” and implied there was little impact on the person. This is not true. Your son should benefit from his diagnosis, as people should understand why he does some things (as my colleagues now understand me)

But in no way was I suggested you were an inadequate parent and I should not have expressed myself in the way I did.

MoMandaS - I believe I have masked my entire life though my first very clear recollection of masking was probably when I was 10. But it has been a real shock to me to find out that people just “know” how to interact and don’t have to plan ahead/learn from others/ consciously decide what the best way to interact would be (ie what society expects, rather than what I’d prefer to do).

But for females in particular masking is very well known and I believe happens from a very young age.

mrsdylanblue - I didn’t say you were an inadequate parent - and I don’t have any information whatsoever to make such a statement. I said, possibly a bit bluntly, that I didn’t think you understood Asperger’s as you referred to “mild autism” and implied there was little impact on the person. This is not true. Your son should benefit from his diagnosis, as people should understand why he does some things (as my colleagues now understand me

I did not say my son had “mild autism” my son “should” not do anything. He does what is right for him and he copes with it the way he chooses to.

"But it has been a real shock to me to find out that people just “know” how to interact and don’t have to plan ahead/learn from others/ consciously decide what the best way to interact would be (ie what society expects, rather than what I’d prefer to do)."

Couldn't agree more, Hedgehog

mrsdylanblue I did not say that you said your son had mild autism. i did say that you referred to mild autism - which you did in this quote

I sometimes to question if it is very mild what the diagnosis is actually going to give the parent/child

So again, I’d repeat that autism can only appear “mild” to the observer - not to the person who experiences it. That's what makes me question your knowledge.

If you were a parent dealing with major meltdowns and unlikely to get a huge amount of support - how would you feel with 20 borderline children who could pay for private diagnosis who will probably acces little support being ahead of you in the queue?

*sorry possibly likely to get badly neede support - that is what I was getting at.

And also my own son is high functioning and his diagnosis has given him nothing.

How old is he @MrsDylanBlue?

How can you judge that for him? It may not be useful right now. The future may be different. It may help him understand himself in adulthood.

He’s 16.

Have read stories from adults who were undiagnosed until their 40s/50s? It may help you to see 'the other path'.

We paid for a private diagnosis as the waiting list was 2 years. It was very comprehensive and taken very seriously by the schools and the children's services, we made sure that the clinical psychology st worked for the NHS in the local authority we lived in and carried out assessments for the NHS. It could not really then be disputed. If my children attended a school with staff like those previous saying their schools paid little attention to private diagnosis I would find a better school. This is about children not a game. The assessment was about £1850. But worth every penny. Family helped pay.

He has been diagnosed...?

mrsdylanblue - you are clearly in a really difficult position and I am genuinely sad that you have to face this. The support for ASD children is not good at all.

I’m not sure “borderline” autism exists? My understanding is that autism, like being pregnant, is binary. But if you are Inferring that some people can get a private diagnosis, that is potentially not as rigorous as NHS standards then perhaps that is true and if it is I am very sympathetic. I don’t have any facts to back such a statement (and you will understand that facts are critical for me). But I’m aware that certain conditions are referred to rather flippantly and in some cases even self-diagnosed - So if we subsititute “mild” autism for “not rigorously diagnosed” autism* then perhaps we agree?

His sister was since diagnosed on the NHS and her diagnosis was in many ways less comprehensive than his and has got her far less help with her education. CAHMS are also utterly useless, after diagnosis you are completely dropped. You are only seen in our area if you are on medications.

I don’t think it’s about ‘borderline’ DC ‘jumping the queue’. If a child with a milder hearing difficulty went private and got a quicker diagnosis and better hearing aids than another child with a more severe hearing difficulty then I would expect the school/any other parties involved to treat both DC according to their particular needs.

A school would never dream of not recognising a deaf child or dismissing a child who needed a wheelchair because their diagnosis was private. They would never turn round and blatantly admit they ‘don’t take the diagnosis seriously’.

'Mild autism' really pisses me off. One of my autistic children is high functioning and challenging and aggressive and has ADHD too and has needed helped and support and special schools, the other is also high functioning but masks and suffers horrendous, crippling anxiety. Neither are mild to the person living with it.

AutisticHedgehog

I hope all autism is rigorously diagnosed.

It’s a Spectrum, which is just that.

And thank you.

From what I understand the OP is an adult so talks of eduction etc are irrelavent to the original question.

I have a son with autism who is in a special needs school. It's made me really look at myself and my past. I few months ago I saw a research paper on the way girls present so differently to boys as children. It hit me hard because every point on the list was my childhood. I'm completely convinced I am autistic now and can't decide if I want an official diagnosis or not.

Sorry for any confusion, the assessment would be for a child.

I have said previously though, how a private diagnosis is received by other agencies isn't relevant to me. This thread was asking about how to go about things and to get a bit of an insight into the private process.

We have been down the NHS route and from first referal to diagnosis took 5 years. Mainly because it was dismissed initially so a re referral to CAHMS was needed after a time.

We are now 20 months into an NHS assessment and have hit a brick wall. My response to that was to ask about private assessment as my child needs their explanation.

School is not an issue, things that need to be in place already are. We live in Scotland as per my OP and as far as I am aware things are very very different here.

But my child, my child needs to know.

Sorry Mither my mistake.

My son had a private diagnosis first. It cost us about £800 and our GP recommended him. We liked the fact that he also worked in the NHS so could be sure he was genuine. We then waited and saw the NHS who said that the person who had already diagnosed my son was far more experienced than he was so he had no doubts. He did go through the motions of the ADOS but it was exactly the same as the private one.

You don't have to justify either why you want to go private or why you want your child to have a diagnosis to anyone especially people who don't know you or your child.

Good luck.

Thanks sazza

Thanks to everyone who has replied, I lost track and couldn't keep up last night but it has been very helpful to hear that some people have gone down this route, and also the huge variations in cost.

Why do prices vary so much?