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      Depression, Mental Health and Crisis Support   06/04/2017

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penny23465

What do I expect??

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I have been trying to get my daughter assesed for 14yrs! Since she was a child I have had problems with her and been told continuously she is just a naughty child and will grow out of it. Having 3 other children I recognised there was a problem with her and finally when she was 19, had been excluded from 4 schools and walked out of college my GP left the practice and along came a new female GP. I voiced my concerns to her and after spending just 10 mins with my daughter told me she is sure my daughter has aspergers!! I had suspected this for some time but did not mention it as I did not want to put words in the doctors mouth.

My daughter was referred for an assessment in November 2013 and 2 weeks ago we finally received an appointment for next week. I have to drive nearly 100 miles by 9am for the appointment and I am told if we are late or miss it we will wait another year for the next one!! I would drive all night if it meant getting her the help she needs.

Can anyone tell me what to expect at the assessment? They say it will take up to 3 hours to complete.

I have been to hell and back with my daughter and each day is a new struggle and a new challenge, I am drained and don't know how to help her anymore.

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oxgirl   

Hi penny23465, sorry you've had such a tough time with your daughter for all these years. I can't help with what to expect at the assessment, I'm afraid, as the assessment for my son was when he was 4 years old, so probably very different from an adult assessment. He is 22 now and it has been a tough road, even with a dx. I wish you both well with the appointment and hope it brings all the answers and help that you both need.

 

~ Mel ~

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Mihaela   

At last it looks as if your daughter will be getting the diagnosis she should have had a lot sooner. For those of us born much earlier there was no such recognition and we spent decades suffering as a result. (I was only diagnosed a few months ago). Even today, it's very much a postcode lottery. There's no point in attempting a diagnosis from somebody who is not a specialist in autism. Where are you? A hundred miles seems a long way off - unless you live on a remote Scottish island! Surely there's a more convenient autism team who can see her. (That off-putting year-long threat seems mean-minded to me).

There's a also the little issue of the scrapping of the Asperger's syndrome diagnosis completely from the ICD-10 and DSM5 (their 'bibles') as well as scrapping PDD-NOS and Rett's syndrome - not to mention PDA which never got a look-in anyway! Officially Asperger's no long exists, and from now of we are simply classed as being somewhere on a spectrum, one end being 'low functioning, and the other 'high functioning'. These terms themselves can be very misleading, and often those of us at the high end miss out on support - to our detriment. I'm classed as 'high functioning' yet ironically my biggest difficulty is executive dysfunction! Despite having been an intellectually gifted child I'm very low-functioning when it comes to day-to-day survival - and needed my parents' support all my life.

 

I was diagnosed as 'being on the autistic spectrum' as are so many others nowadays, when in fact I have what is commonly known as 'female-type Asperger's syndrome'. It is distinctly different to 'classic' AS (more often associate with males), and this too should have a proper diagnostic label in my opinion. The reason that these labels are so important is that treatment needs to be very different according to what type of autism we have.

 

I say all this just to warn you of the complexities and chaos involved in the current system. Diagnosis depend very much on who conducts it. I'm presuming that you and your new GP are seeing signs of 'classic' AS in your daughter - most commonly associated with males. If so, you'll be relieved to know that diagnosis tends to be easier and more straightforward. She will be interviewed, and so will you (mainly about her early childhood), and she will be given a simple standard test (usually the ADOS test, which is suitable for all ages). It involves miming, describing the story in a picture book, making up a little story from random objects taken out of a bag, etc. It's quite bizarre, but has been proven to work. This tests for 'classic' Asperger's syndrome only, and doesn't properly work for 'female-type AS'.

 

I hope this helps. Good luck, and please let us know how you get on.


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trekster   

Hello and welcome

 

i find it disgusting the way you and your family have been treated regarding the diagnostic assessment for your daughter. After shes been assessed and you have seen the report i would write to PALS to complain about the distress you and her have received.

 

The assessor will ask you questions about your daughter when she was a child, milestones, interacting with others, sleep issues, how she behaves when you change something without warning and/or explanation. Then they will ask your daughter questions testing her for the main features of autism/aspergers.

 

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx

 

There might be a parent/carer branch of the NAS near to you as well, see if they have any tips on approaching diagnosis.

 

i had to wait nearly 2 years to get an assessment and diagnosis of my aspergers, the accompanying mental health diagnosis of CPTSD (relating to my abusive childhood) was only recently recognised, they used autism as an excuse not to assess me.

 

Really hope you can find some answers at assessment.

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trekster   

How did your daughters assessment go?

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Livelife   

I hope the assessment went ok for you both and you will get the help that is on offer with the diagnosis.

I was diagnosed on the spectrum they say high functioning but I struggle with everyday life and I dont think even with the assessment the true difficulties are recognised by the help actually recieved but I hope that wont be the case in your situation.

I had to have two appointments a week apart and was told after the second. In my area there is little support because I have no car and need to travel on two busses each way to get to the autistic centre and I have difficulties with public transport.

Would like to know how things went.

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