I'm a single parent with a 14 year old daughter who was diagnosed with ASD earlier this year at the National Autistic Society's Lorna Wing Center in Essex. I wondered if she could have ASD since she was 5 as she seemed to have subtle issues with empathy. I didn't have major concerns as she seemed happy and wasn't particularly struggling. I eventually went to the GP about it when she was 11 who referred us to the NHS CAMHS team. CAMHS said that because my daughter has been effectively abandoned by her mum that they think she has abandonment issues not ASD which I eventually accepted. However about a year ago she started having what appeared to me to be autistic meltdowns followed by shutdowns. Since CAMHS have repeatedly refused to give her an autism assessment I paid for the private assessment early this year.
The issue I've had since then is that no one accepts the diagnosis. My daughter refuses to accept that she could have ASD as in her mind autistic people are wierdos and shes not like that. My parents wont accept it and think that I lead the assessors to think she has ASD when she doesn't, my mum even said that reading the report I seem autistic not my daughter as the person described in teh report seems more like me. More importantly the psychiatrists at CAHMS dont accept it, they initially commented about the psycologist who assessed her not being a medical person like them, they've questioned the use of DISCO as the norm in the NHS is to use ADOS, they also say that she doesn't seem autistic when they speak to her and dont seem to take account of the fact that the diagnosis mentions that my daughter masks her autism a lot.
The difficulty I have is that they're obviously medical professionals and I dont necessarily think that I know better but at the same time she's had a private assessment that said she is autistic and additionally I've read so many accounts of girls not being correctly diagnosed as so much focus has been on boys with regard to ASD that the different symptoms in girls have been ignored. On top of this the people at CAMHS say that she doesn't seem autistic but they've not specifically assessed her for autism in the 3 years we've been under their care. Also if CAMHS ever did decide to assess her I've seen a number of people mention online that ADOS which they use often misses autism in girls as many girls mask their symptoms.
I have to continue seeing the psychiatrists at CAMHS as my daughter has a number of issues, she has issues with eating and is being seen by the eating disorder unit, she has physical and verbal tics, she has had issues with self harm (biting her knuckles and cutting her arm with a pencil sharpener), she has extreme levels of anxiety, she has issues with balance and walking, she has issues with incontinence and she has hallucinations. Whether she has ASD too is important however as it potentially has an effect on any treatment for these other conditions and it's distressing for me that no one accepts her diagnosis.
I still personally think that its the correct diagnosis as when we're in the meetings with the CAMHS psychiatrists I see my daughter and think wow you seem so "normal" and I'm impressed with how socially aware she seems, then we walk out of the clinic and we're alone and instantly she acts completely differently with me loses the social awareness and composure that she seemed to have and I can see the ASD again.
I dont really know what to do for the best
Contact this group, it is very helpful.
SAFE is a support group for individuals and families affected by Asperger Syndrome (AS) and High Functioning Autism (HFA) in Essex, including the unitaries of Southend and Thurrock.