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Private ASD assessments - any experiences? - Carers UK Forum

Private ASD assessments - any experiences?

For issues specific to autism / Asperger Syndrome.
Hi all,

I wondered if anyone has gone down the route of a private ASD assessment? My daughter, now 20, was diagnosed with Social Communication Disorder when she was 15 by the Educational Psychologist. She was referred to the local CAMHS where she was further diagnosed with anxiety and depression and had psychotherapy until she reached 18, when she progressed on to the psychotherapy dept of the Adult mental health service.

Over the years, her social interaction has improved a bit but she still struggles with 'over-stimulation' when in busy places, nuance and inference. Her short term memory is shot to pieces and her lack of brain/speech co-ordination is fraustrating her massively as she can't get the words out. She continues to self harm, including numerous overdoses. She has also had episodes of voice hearing and hallucinating and has very disrupted sleep patterns. She is currently on Mirtazapine.

During these five years, she has never really received any support for the ASD, but rather they have soley concentrated on the depression side of things. I recently pushed (with the support of her GP) to have a mental health assessment with a psychiatrist. We sent him her original ASD diagnosis report prior to the appt and we got two sessions which were so ineffective that we may as well not have bothered. Within the first 15 minutes of meeting her he said she wasn't on the autistic spectrum but just needed to get out more *head in hands* Image Image He also upped her meds.

So I guess my question is, is it worth her going through another round of assessments via a private route?

There seems to be a fair bit of support for children with ASD but not much for adults, so I don't even know what extra support she might get, even with an up-to-date diagnosis.

Thank you for reading my waffle! Any thoughts very gratefully received.

Cupcake xxxxx
Hello cupcake ,and sorry to hear about your problems.Just to let you now we went privately for my hubs diagnosis , just because going through the hassle of getting one from the Primary Care Trust was too much wrangling and longdrawn.
On the NAS site, there is a list of people who do these tests privately.We chose one was a doctor and who knew her field well.We had to travel a long way but we wanted it to be right.
The relief for my husband knowing -at long last-what he had was immense. I would go for it if you can.Once we got that diagnosis no one ever questioned it and he got put under mental health and prescribed the right meds.

good luck
Thank you B - that's so helpful to know Image

Does your husband receive any treatment/meds/support specifically for his ASD needs? I wonder if anything will be available to my daughter once she's got her diagnosis, other than the meds and psychotherapy that she has now, which don't really seem to help her with her ASD issues (but do help with her depression)

Thanks again - it's such a relief to be able to talk to someone who get's it! Image

Love cupcake xxxx
I have not...but just to say
Her short term memory is shot to pieces and her lack of brain/speech co-ordination is fraustrating her massively as she can't get the words out
That sounds more like part of very mild Cerbal Palsy, my youngest has this and it was the thing that cause him (for want of better words) to be dx with it.
Hi Cupcake,

I haven't had any personal experience of private ASD assessments (both my Girls were dx. at young ages).

I don't know whether this is helpful to you but does your daughter receive a publication/magazine called 'Asperger United'? It's distributed for free by the National Autistic Society.

There is an interesting article in this month's edition called 'Family on the Spectrum', written by a young man who was dx. at the age of 24. He had been through similar to your daughter.

I hope it's okay for me to post a link. It's http://www.autism.org.uk/aspergerunited. I haven't had the chance to check if the article is on the page (in the middle of keeping Youngest on track and getting her to her Leaver's Performance tonight) but hope it's there for you Image

I did wonder about short term memory problems and whether there was a link to the ASD (my Eldest Daughter has difficulties with short term memory and her recall, although slowly improving, still causes problems at times). I'm trying to find out ways to help Eldest in this area too.

Sezzie x
Hi Cupcakes, I have prob put that very simplistically- like - ta da ! diagnosis followed by attention.No, it wasn't quite like that.Our G.P. took the diagnosis very seriously as he looked a twit quite frankly.My hub had been having problems for years and because of many problematic behaviours was under a psychiatrist at the time.The psyche didn't have a clue.She had labelled him as "recurrent depressive syndrome" and hadn't even thought of aspergers.It was a sheer flook that took us down that route and led us to the right person.
To get his meds- a high dose of anti-deps and an anti psychotic which really have helped,are about all he was offered.He was offered to attend an aspie day centre kind of place but as he dislikes people that was never on the cards.
I was told at diagnosis that there prob wouldn't be much on offer to help the aspergers,which was spot on.Things have improved a lot for us though with a greater understanding of what we are dealing with,and me getting some carer support.
all the best
Hi Cupcake,

no experience of having a private assessment for an adult. Some of my pupil's have had them and because they are conducted by someone who really does understand ASD, the reports and recommendations have been very thorough and pertinent.

Having an accurate and documented assessment is useful if arguing for specific services (but of course only if they are available in your area,) I also think for those with Aspergers and higher functioning autism - they are useful to the person they are about. I have heard adults say how relieved they were to know why they were different/had difficulties etc that their life now made sense/ they were relieved they weren't mad etc

Despite lots of campaigning there is still a real lack of knowledge of ASD amongst so many professionals and often those who have had training - have had tokenism training ie a few hours of autism-awareness - which leads to them making sweeping generalisastions. Drives me mad.

Thank you so much everyone for all your kind words, advice and ideas. Twice recently we have been told that 'labels aren't helpful' but I can't help but disagree.

You're ringht Melly - it does help enormously when you're trying to get the right support - and yes, it drives me mad too!

Thanks again all, I'll let you know how we get on Image

Love cupcake xxxx
we were told last week by idiot GP that there had never been a diagnosis of Aspergers made for my partners son(16 y/o). Saw another GP this morning who has prescribed Cilatipram until he can be seen by CAMHS, has put through for an emergency referral.
Oh Karen - It's mad isn't it? I don't understand why my daughter's diagnosis 5 years ago doesn't seem to be recognised now - it's not like ASD is something you grow out of. For that diagnosis, she had to complete a variety of tests including speech, scenario based comprehension etc and her scores were definitive of an ASD (specifically Social Comms Disorder). Her issues now are no different to then, and yet the psychiatrist, without carrying out any specific diagnostic stuff, decides within minutes that her diagnosis was wrong???? It's all very confusing and frustrating.

On a happier note, her transition from ESA to JSA is being aided by a fantastic DEA at the Jobcentre. He is offering her so much support and was able to see instantly that she had comms difficulties without us even having to say anything (perhaps he should be the psychiatrist Image ) and was great with her.

He's looking into work experience placements and volunteering for her to get back into the swing of things. She has worked before but sadly had to leave her previous two jobs due to fluctuations in her mental health. They will then look for paid work for her and set up lines of communication with her employer to support her to stay in work if she has another dip. It's all good Image

I felt so proud of her today - she is making progress and is feeling better about herself and that's soooo lovely to see Image Image Image

Love to all,

Cupcake xxxx