Adult Asperger's Help

My daughter was diagnosed via action for asperger's after we were treated appaulingly by the local camhs team(they initially refused to do an assessment and then did a botched ADOS and ignored the SALT/ OT reports that were "consistent with a child on the spectrum").

We met with Elaine back in November 2012 for a pre-assessment, she observed our daughter and asked us as well as her many questions before coming to the conclusion that she was likely on the spectrum and a formal ADI-R assessment should be undertaken. We had the ADI-R in January this year (I also forwarded OT reports etc) and she was diagnosed with ASD. During that very very long appointment we were asked very extensive questions about our daughter and again the doctor observed her behaviour, at the end he scored her and she was 3 times the cut off point for ASD.

We have been to see Elaine a few times and she has helped us on several occassions ranging from DLA forms, to sending letters explaining about our daughter's condition to her urologist to counselling sessions for our daughter. She's also been to more informal things, a drama afternoon that was specifically for kids/teens on the spectrum, we more recently went to a high tea afternoon (which was a fundraiser for the new sensory room) and Elaine & co had set out lots for children & adults to do and also had a "chill out" area for any person (child or adult) who needed somewhere to get away from the crowd, noise etc. This sunday they are having a learn to fish session and a few weeks ago they had a minecraft afternoon. 

Elaine also tries to tailor everything to the individual, so for example when we went to see her the first time my daughter had expressed her love (obsession) for monster high dolls and the next time we went Elaine had bought a few. She has lots of things geared towards obsessions so that when someone goes in for whatever reason whether that's an assessment or counselling there is soemthing for them to focus on if they don't want to sit near Elaine or make eye contact etc, she has lots of fiddle toys, puzzles, lego etc.

Both Elaine and the GP who did the assessment (her husband) have vast knowledge on autism and not just in a clinical setting, they have a son with Asperger's so they know on a personal level what it is like to have a family member with an ASD. They also get to see just how it can manifest differently in girls then boys due to dealing with so many people of both sexes on the spectrum. I was worried we would get screwed again because our daughter's obsessions are cosidered "normal"(teddy bears, monster high dolls, movies) but Elaine & her husband see past those sterotypes and understand that it's the intensity NOT the subject matter. Or when we were asked if she had any unusual obsessions (this was seperate to the previously mentioned ones), we were both unsure of what they meant by unusual and once given examples(of something their son became obsessed with) we were able to relay lots of things (such as her obsession with bins at the age of 3, her "collection" of sweet wrappers at the age of 4  etc). 

It was all a very plesant experience and exactly how an assessment should be, you shoudn't (as happened with CAMHS) come out feeling personally attacked for having Asperger's or ignored because your child doesn't fit their sterotypical view of AS. I would highly recommend their services to anyone, my husband is hoping to go to them at some point for an assessment as we (and Elaine) believe he is also an aspie like myself and our daughter. We haven't had any problems with it being seen as an official diagnosis either, I don't know how different it is for adults but so far our daughter hasn't been denied anything because her assessment was done by a GP. The person at CAMHS who assessed our daughter using the ADOS was not a clinical psychologist or psychiatrist she was a paediatric cardiologist who had been trained to use the ADOS. The difference between the two of them is that Dr Nicholoson lives with autism 24/7 he observes his sons behaviour day in day out and he regularly assess' children with ASD(I think he does it most weekends). The cardiologist however works with hearts day in day out, has no personal connection to autism and holds a once a month autism clinic in which she does assessments...who do you think is more likely to recognize autism? 

My own assessment was done at the CLASS clinic in Cambridge (right next door to the autism research centre) and the Dr who assessed me was a "speciality registrar" again not a psychologist/psychiatrist so I'm not sure if that is the law, I think it just tends to be that field that has more autism trained specialists.

Also just a note re the sensory room, they have only recently aquired that room and are raising funds as quickly as possible to kit it out. Yes it has strip lighing at the moment but it clearly states on the website that they are hoping to get LED lighting, it's just a matter of funds, I know thanks to the high tea event they have just purchased a sensory dark room suitable for adults & children.

My daughter was diagnosed via action for asperger's after we were treated appaulingly by the local camhs team(they initially refused to do an assessment and then did a botched ADOS and ignored the SALT/ OT reports that were "consistent with a child on the spectrum").

We met with Elaine back in November 2012 for a pre-assessment, she observed our daughter and asked us as well as her many questions before coming to the conclusion that she was likely on the spectrum and a formal ADI-R assessment should be undertaken. We had the ADI-R in January this year (I also forwarded OT reports etc) and she was diagnosed with ASD. During that very very long appointment we were asked very extensive questions about our daughter and again the doctor observed her behaviour, at the end he scored her and she was 3 times the cut off point for ASD.

We have been to see Elaine a few times and she has helped us on several occassions ranging from DLA forms, to sending letters explaining about our daughter's condition to her urologist to counselling sessions for our daughter. She's also been to more informal things, a drama afternoon that was specifically for kids/teens on the spectrum, we more recently went to a high tea afternoon (which was a fundraiser for the new sensory room) and Elaine & co had set out lots for children & adults to do and also had a "chill out" area for any person (child or adult) who needed somewhere to get away from the crowd, noise etc. This sunday they are having a learn to fish session and a few weeks ago they had a minecraft afternoon. 

Elaine also tries to tailor everything to the individual, so for example when we went to see her the first time my daughter had expressed her love (obsession) for monster high dolls and the next time we went Elaine had bought a few. She has lots of things geared towards obsessions so that when someone goes in for whatever reason whether that's an assessment or counselling there is soemthing for them to focus on if they don't want to sit near Elaine or make eye contact etc, she has lots of fiddle toys, puzzles, lego etc.

Both Elaine and the GP who did the assessment (her husband) have vast knowledge on autism and not just in a clinical setting, they have a son with Asperger's so they know on a personal level what it is like to have a family member with an ASD. They also get to see just how it can manifest differently in girls then boys due to dealing with so many people of both sexes on the spectrum. I was worried we would get screwed again because our daughter's obsessions are cosidered "normal"(teddy bears, monster high dolls, movies) but Elaine & her husband see past those sterotypes and understand that it's the intensity NOT the subject matter. Or when we were asked if she had any unusual obsessions (this was seperate to the previously mentioned ones), we were both unsure of what they meant by unusual and once given examples(of something their son became obsessed with) we were able to relay lots of things (such as her obsession with bins at the age of 3, her "collection" of sweet wrappers at the age of 4  etc). 

It was all a very plesant experience and exactly how an assessment should be, you shoudn't (as happened with CAMHS) come out feeling personally attacked for having Asperger's or ignored because your child doesn't fit their sterotypical view of AS. I would highly recommend their services to anyone, my husband is hoping to go to them at some point for an assessment as we (and Elaine) believe he is also an aspie like myself and our daughter. We haven't had any problems with it being seen as an official diagnosis either, I don't know how different it is for adults but so far our daughter hasn't been denied anything because her assessment was done by a GP. The person at CAMHS who assessed our daughter using the ADOS was not a clinical psychologist or psychiatrist she was a paediatric cardiologist who had been trained to use the ADOS. The difference between the two of them is that Dr Nicholoson lives with autism 24/7 he observes his sons behaviour day in day out and he regularly assess' children with ASD(I think he does it most weekends). The cardiologist however works with hearts day in day out, has no personal connection to autism and holds a once a month autism clinic in which she does assessments...who do you think is more likely to recognize autism? 

My own assessment was done at the CLASS clinic in Cambridge (right next door to the autism research centre) and the Dr who assessed me was a "speciality registrar" again not a psychologist/psychiatrist so I'm not sure if that is the law, I think it just tends to be that field that has more autism trained specialists.

Also just a note re the sensory room, they have only recently aquired that room and are raising funds as quickly as possible to kit it out. Yes it has strip lighing at the moment but it clearly states on the website that they are hoping to get LED lighting, it's just a matter of funds, I know thanks to the high tea event they have just purchased a sensory dark room suitable for adults & children.