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Lorna wing Center for autism assessment

ceejaydj

Hi, I am having difficulty getting my daughter diagnosed with autism. It was picked up when she was 2yrs old and she was assessed at 4yrs but as she was starting to mix a little with her peers it was felt that she should wait until she was 7yrs old to be reviewed again.  She has remained at blank model 3 for language for the last 1-2yrs when assessed by her SALT , blank level 3 is for children around 4-5 yrs and as she is 7yrs now and it is starting to become apparent that she has a language disorder Of an autistic nature.

She is basically a classic, high function/asperger autistic girl in my eyes. I have been studying autism and girls for the last few years and I can see how she is developing and progressing.  Nothing comes naturally for her she copies and learns from others. She has vast sensory issues, very rigid behaviours and routines, suffers from anxiety and loves talking about bugs, numbers music and books : )  i also have two sons suspected of having aspergers and are on the asd waiting list for assessment. So as you can imagine, autism is a huge feature in my life.

I have numerous reports from private tutors, nurses, ect since her last assessment at 4yrs which indicate autistic traits.  But, she was observed at home last week and the psychologist told me that my daughter doesn't meet criteria for an asd diagnosis Anymore. I was completly shocked and speechless. I have been patiently waiting the last 3yrs reading about autism and observing my daughter that I was convinced she will get a diagnosis finally but no!  It's not over yet though as my daughter has an assessment with her SALT in a few days and the final say will be between them. 

Worse case scenario, if it comes back as my daughter not having autism or that the assessments are still inconclusive, would I be able to ask for a referral to the Lourna Wing center? My daughter has a huge file full of assessments with different professionals  since she was 3yrs( it took a year to get the first appointment) so she has lots of information.

Has anyone else managed to get a referral?  If so, how long did it take and what happened?  

I can't bare my daughter getting Older without a diagnosis, without the proper  support she needs etc i know full well she would probably get a diagnosis in her teens when the social devide will appear more extreme but why should we all have to wait as its obvious to all that know her well That she is on the spectrum?!

thank you, any info would be great x

Parents

  • Thanks for your reply.

    I am busy gathering as much info as i possibly can ready to hand over to the team in a few days time.  She meets full asd criteria in my eyes and i have a file full of info from what ive onserved of her to suport this.

    As she was properly assessed 3 yrs ago with the ados and interview, this review was just an informal observation to see how she has changed since she was 4-5yrs and if the psychologist felt my daughter was diplaying asd traits then im sure more observations would follow.  She did say she needed to talk to my daughters SALT (who is on the asd diagnosis team) who knows my daughter better than the psychologist. 

    My household was was very piecefull and quiet when the onservation took place, my daughter was initially shy but after a while she started talking non stop.  She was observed playing briefly with her brother, well telling him to throw balls at her, and she maintained good 'ish' eye contact.  She was able to have a two way conversation but i did notice that my daughter didnt ask the psychologist anything and after the psychologist commented on something my daughter then went staright back into talking about her favourite things, books, bugs and music and numbers.

    I can understand why the psychologist would feel that my daughter might not have autism if she didnt know my daughter and just based on that hour and a half of observation (although she did think my daughter had a language disorder instead) but she has known my daughter for 4yrs and has read her huge files and recent reports so im totally baffled why she said what she did??!!

    I have a very good friend that is a retired social worker that worked helping families that had children with autism, she has offered to come to any meetings with me which is great and i think i will take her up on it.

    I will know more in the next week but i just hope we wont be told to wait another 3yrs for another review!!

Reply

  • Thanks for your reply.

    I am busy gathering as much info as i possibly can ready to hand over to the team in a few days time.  She meets full asd criteria in my eyes and i have a file full of info from what ive onserved of her to suport this.

    As she was properly assessed 3 yrs ago with the ados and interview, this review was just an informal observation to see how she has changed since she was 4-5yrs and if the psychologist felt my daughter was diplaying asd traits then im sure more observations would follow.  She did say she needed to talk to my daughters SALT (who is on the asd diagnosis team) who knows my daughter better than the psychologist. 

    My household was was very piecefull and quiet when the onservation took place, my daughter was initially shy but after a while she started talking non stop.  She was observed playing briefly with her brother, well telling him to throw balls at her, and she maintained good 'ish' eye contact.  She was able to have a two way conversation but i did notice that my daughter didnt ask the psychologist anything and after the psychologist commented on something my daughter then went staright back into talking about her favourite things, books, bugs and music and numbers.

    I can understand why the psychologist would feel that my daughter might not have autism if she didnt know my daughter and just based on that hour and a half of observation (although she did think my daughter had a language disorder instead) but she has known my daughter for 4yrs and has read her huge files and recent reports so im totally baffled why she said what she did??!!

    I have a very good friend that is a retired social worker that worked helping families that had children with autism, she has offered to come to any meetings with me which is great and i think i will take her up on it.

    I will know more in the next week but i just hope we wont be told to wait another 3yrs for another review!!

Children
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