awful time at assessment

Thank you IntenseWorld I know you're right. I will hopefully get the courage to go and talk to him one day. its just people find it to be such a difficult journey but it effects me so much now I know it would help to understand it more and to be able to get support.

Thank you IntenseWorld I know you're right. I will hopefully get the courage to go and talk to him one day. its just people find it to be such a difficult journey but it effects me so much now I know it would help to understand it more and to be able to get support.

@Mason, you need to take control and not let other peoples' bad experiences put you off.  Have you taken the AQ test?

The shortened version which you can take to your GP when you ask for referral is here: http://docs.autismresearchcentre.com/tests/AQ10.pdf

The full version is here: http://www.autismresearchcentre.com/arc_tests

Sorry to hear you've had such a bad time with your assessment, this is what puts me off contacting my GP, I keep meaning to because I'm certain I have aspergers, ive thought it for a long time and even my parents agree with it. I wouldn't be able to deal with all that though, that sounds ridiculous. It's terrible that autism is missunderstood by professionals, what hope do we have of autism awareness when even the doctors who diagnose it don't have a clue.

I agree with Longman, this is a matter for complaint.

Write to the clinic explaining why you feel the assessment was incomplete and ask for reassessment with someone whose credentials and experience you can check out beforehand, state that if they are unable to do this, you are more than happy for them to refer your daughter onwards for a comprehensive assessment at centre with very experienced clinicians.  If they refuse complain to PALS: http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

You can also leave a bad review for them, as they get notified and they respond, and you can tell everyone how awful they were: http://www.nhs.uk/Service-Search/Autism-assessment-and-diagnosis/LocationSearch/309

There are other sites you can review the NHS on too.

when we were first alocated to them they had no funding so only did a part time caseload but they received funding not long back so they have taken on a lot of staff and i wonder if they would be the ones kicked out of camhs in the shake up not long back in Leeds as it was a very poor service then which has been improved with new ways to assess children, maybe those lot are used to the 'old' way.

I was stunned at the way it was done as we have had 2 previous assessments with camhs and neither were as short as this.

That's got me well and truly puzzled. Question for NAS - do any autism diagnostic services conduct a diagnosis the way it is decribed here?

it was done by the autism diagnositic service, the only questions they had were in the first bit where a man asked us about when she was 4yrs old (constantly) and he took the notes and forms i provided and what i had been asked to have B fill out. I am not sure how to get these back so i am going to have to go back an ask for them. I am planning to go to the gp again but i know he won't do anything till the report comes in.

Well that's certainly not an autism assessment.

And frankly I think you have grounds for a serious complaint. As IntenseWorld has already suggested, go back to your GP, explain that it wasn't a properly conducted autism assessment, and that you wish one to be carried out properly.

Go to the home page of the National Autistic Society web page, and look under "About Autism", select "All about Diagnosis" then under that select "Diagnosis: information for adults". There's a lot of information in here, just NAS is a bit of a warren, so be prepared to go back and forwards through the headings.

There is for example a complaints procedure. And in this case I think you ought to pursue a complaint. The ordeal you and your daughter have been put through, clearly by people who haven't a clue about autism diagnosis, is a matter for serious complaint. If they are posing as autism experts when they aren't, in a misleading fashion, they may even have committed an assault.

The assessment would want to know about schooling history, and would ask you a lot of questions about the growing up process. They would be trying to find out if your daughter manifested the traits needed as evidence, so she would be asked to dicuss her recollections of things, not asked to do puzzles.

But there are some disgracefully dishonest people out there posing as autism experts.

at the end of that we were sent out for less than 5 mins then called back in and told she doesn't have autism just axiety thats all caused by trauma of her father leaving when she was 7 and her elipletic fits.

yes there were 5 women of various professions like a speech therapy one a phycol one and something else i can't remember as she introduced them very quickly. They did a picture test of a holiday scene which the lead woman asked her questions while sticking the 'i've just booked my tickets' which she said twice and B ignored her. they did a puzzle in which B was given 4 pieces and then B waited for the other bits which the woman then asked did B want them to finish it so B said yes and was given 2 more then when those were in the puzzle B said 'can i have the others now please', there was a loads of monkey up a tree pics which B was meant to tell story from, it was a very 'exactly as shown thing' and then the woman said to B 'will you stand up with me and tell the others about the story' so B said she didn't want to so woman said 'are you going to leave me standing alone like an alien from Mars?' B shrugged.  then it was a frog/toad book on floating lillypads which B picked out things that no one else noticed, It was a very 'exacxtly as shown' from B. then the last one was 5 things from a bag to make a story with the woman led her along firstly the car B said it didn't have a driver so woman got all hetty and said ohhhh it's an automatic driverless future car, where is it going so B said the brick woman wanted a place for brick to be so B said dunno Mars, then woman said pick another object so B said feather and woman said what it do so B said it flaps and wafts so woman said ohhh it wafts it back to earth where does it go now so B said the brick so she said is that a garage? and what does the car do with this ball thing B said it a ball she said does it play football then? and B said yeah sure ok.

OK I missed the 19 bit. Nevertheless the conduct of the assessment seems most improper.

The daughter is aged 19.  This alone means the assessment should have been more in-depth and complex as adults develop masking behaviours and learn some things.

Doesn't sound like a proper assessment. Was it carried out by the local autism diagnosis team, if there is one, or was this something mocked up by the psychologist attached to your GP clinic?

What I don't comprehend, and it would be useful if you are able to clarify, is that there appear to be five women present at the assessment, one of whom is making your child do tests. Who were the other women? It sounds more like a "kangaroo court" than anything remotely professional.

The tests could be on the lines of "thinking in pictures". A lot of professionals think this is the be all and end all of sorting children with autism. You show them sets of pictures of social or recreational situations which ask something like "what is little johnnie thinking in this picture?" If a child is able to work it out straight away, or with minimum coaxing, they don't have autism (allegedly!!!).

Also if this was an improper set up for a diagnosis there may be issues of criminal misconduct to be pursued. After all your child is a minor and any assessment MUST be conducted within the law.

NAS Moderators may be able to check up on this, or someone else may know, but this assessment sounds highly irregular and unprofessional.

I don't personally know any clinics anywhere, only what I have read.  I just found this (hoping it's not the place you already went!): http://www.spirehealthcare.com/hull/news/autism-diagnostic-service-now-available/

You could look on the NAS directory: http://www.autism.org.uk/directory.aspx

At the end of the day, it's down to your GP to decide on which out-of-area clinic she should be seen at, obviously you want to go as near as possible though.

Thank you, I know it is difficult as we have been trying to get help since she was 10, I have a few others in my family who have Aspergers some who are diagnosed and some not. They don't live near me so i can't go to the same place they do.

I am going to go back to my gp soon as they are really good and can see there are issues with her, they just don't know where to send her. Are there any good clinics in Yorkshire?

Go back to your GP, explain what happened, say you felt the testing was nowhere near deep enough as it is known females on the spectrum mask their difficulties and ask for a second opinion.  The NAS has a centre called the Lorna Wing Centre in Bromley, Kent which specialises in identifying females: http://www.autism.org.uk/our-services/diagnosing-complex-needs/about-the-nas-lorna-wing-centre-for-autism/contact-the-nas-lorna-wing-centre-for-autism.aspx

Also, there is the Maudsley in London http://www.national.slam.nhs.uk/services/adult-services/autismclinic/ (more info here: https://www.national.slam.nhs.uk/wp-content/uploads/2012/04/Autism-Assessment-and-Behavioural-Genetics-Clinic.pdf)

The renowned ARC (only for Cambridgeshire and Peterborough) http://www.autismresearchcentre.com/clinics

Also, read this information on females with autism and if necessary send/give it to your GP when you ask for second opinion: http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx

http://www.autism.org.uk/news-and-events/news-archive/5-may/girls-and-women-face-battle-for-diagnosis-and-support.aspx

https://www.senmagazine.co.uk/articles/articles/senarticles/is-autism-different-for-girls

http://www.nhs.uk/news/2013/11November/Pages/Is-it-harder-to-detect-autism-in-girls.aspx

http://www.autism.org.uk/news-and-events/news-from-the-nas/live-chat-identifying-and-educating-women-and-girls-on-the-autism-spectrum.aspx

I'm sorry you went through this, it is unacceptable and you are right to question it.  If the NHS fails you, you can choose to get a private diagnosis (upwards of £600) and you could complaint to PALS and ask for compensation to cover your costs of going private, but give a second opinion a go first.

I'm sick of the NHS failing females with autism.  It happened to me and my eldest child and I've read of many other stories.  The evidence and media stories are out there, but the government is not addressing it.

sorry it did it twice