Advice for non diagnosis

Hi, 

I am looking for advice. My daughter (age 8) has been going through the NHS system for autism assessments. We finally after 3 years got told she "doesnt fit the criteria for autism". 

The reasons they gave were that: 

- she doesnt line up toys 

-she doesnt stim by rocking or spinning 

- she doesnt know lots of facts about a topic 

- she can cope with routine changes 

- she hit milestones as a baby

And she has friends. 

They dismissed her sensory issues and said its most likely ADHD.

I relayed this information to her school and they have disagreed with the decision too. 

She sensory seeks to keep herself calm 

She has attachments to her fidget toys

She wont wear certain materials (ie denim or silk) 

She has had sessions with a mental health nurse due to high anxiety and low self esteem

She has had interventions at school about coping with anxiety and self image

She struggles to 'fit in' and alters her behaviour to fit who she is around 

She repeats questions or re tells the same stories frequently 

She misunderstands social situations very easily and then becomes very distressed 

She doesnt understand boundaries - she will always hug people randomly even strangers (obviously i have spoken to her about this an explained why thats not always a good idea etc) 

She worries a lot about what people think about her

She walks on her tip toes 

she has recently been diagnosed with Dyspraxia. 

She becomes easily disregulated when she cant do something 

She has had episodes where she hits, bites or scratches herself when she is upset 

My self, and school both believe there is an element of ADHD but many traits point to Autism too

So my question is this: Is it worth challenging the decison? Seeking a second opinion? 

And HOW do i even go about this? 

I am so worried for when she goes to secondary school that she wont get the right support without a diagnosis. I also want to get an EHCP in place for her but school have even said she is unlikely to get an EHCP without a diagnosis

All i want is support for my little girl Sob

Help and advice please!!! 

Parents
  • Ooh now that is a tough situation, Kateem. I’m from America, so I can’t give much in terms of specific advice. However, I’d recommend getting a second opinion. I know that’s probably easier said than done, but different doctors can give different opinions. I can understand how that diagnosis would be important for getting the right supports in place for her.

Reply
  • Ooh now that is a tough situation, Kateem. I’m from America, so I can’t give much in terms of specific advice. However, I’d recommend getting a second opinion. I know that’s probably easier said than done, but different doctors can give different opinions. I can understand how that diagnosis would be important for getting the right supports in place for her.

Children