Parents of children on the Autism Spectrum

Carolann - Interview 36

Female

Brief outline: Carolann's daughter, Nita, was diagnosed with Asperger syndrome when she was 14. Nita has written a book about her experiences, had some unsuccessful experiences at university and is currently teaching herself Russian, Japanese, Spanish and Chinese.

Background: Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.

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Carolann, a teacher, and her husband, who is in the music business, have one daughter, Nita, aged 23.  Nita was born by emergency caesarean and Carolann thought straight away that something about her daughter was different.  Nita didn’t like to be cuddled or handled and Carolann took her to 23 doctors and health professionals over the years but was told that Nita was a wilful child and not to worry.

As she grew older, Nita did not interact with other children and was rarely asked to children’s parties or to play with other children.  When she went to secondary school, things got worse and Nita was badly bullied. Carolann moved her three times to different schools because of the bullying and Nita became hysterical about having to go into school. Eventually Carolann contacted Young Minds who suggested that Nita might have AS.  Carolann rang the National Autistic Society who gave her the number for a local specialist who assessed Nita;  this assessment enabled Carolann to get her GP to refer Nita for diagnosis when she was 14.

Carolann felt relief on getting the diagnosis, but school continued to be difficult because Nita did not get appropriate support.  She went to university but only briefly because she was bullied and, again, lacked appropriate support.  When she was 19, Nita discovered that she had a flair for languages and went to another university to learn Czech and Russian.  Again she got no appropriate support; she became very depressed and left after two months. 

Since leaving university, Nita has continued to learn Russian, Japanese, Spanish and Chinese, written a book called “Standing Down, Falling Up” (Lucky Duck Publishers, ISBN 1-873-94298-2) and given talks at conferences.  She writes music and enjoys watching alternative films. Carolann describes how Nita has learned some social rules and so can socialise with other people effectively, but this takes a lot of effort and exhausts Nita. She describes her daughter as intelligent, beautiful, articulate and funny, but "autism almost invalidates everything about her" as far as the outside world is concerned. 

Carolann has set up a support group called SAFE (Supporting Asperger Families in Essex) and does a lot of advocacy work.  She feels that the direction her life has taken has given her purpose and meaning.  She is optimistic that eventually people will recognise the valuable contribution people with AS can make to society.

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