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Advice for non diagnosis

Kateem

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

  • If you and the school feel you haven't quite been heard, it might be worth pursuing a second opinion. I think the things that seem strange to me is them listing specific things that your daughter doesn't do. But it's a spectrum condition, and everyone presents differently, and they are meant to be examples, not specifics. My son (11) was diagnosed and some of the reasons you were given for not being autisitic he doesn't do either!

    I did like the others replies you got, I think they have good advice too. It is possible to have traits but not be diagnosed, so I don't want to give a strong opinion, but if you look at the DSM you can understand yourself if all the criteria are met and if you mentioned everything you feel you should have. Like my son does have friends -he struggled early in life but his interest in games has meant it easy to connect with others now he's older, but when they asked him about it more, he was admitting things that did show his struggles socially. If they are doing a good job, they should be looking deeper, as for example hanging around with friends doesn't show what's going on inside their minds. And autism in girls can look very different to boys, so you need someone who is skilled in spotting the signs. 

    I hope you can get a resolution.

  • in reply to Cinnabar_wing

    Thank you so much for a great response! 100% agree these could possibly just be traits, i just want to be sure as i defiinitley feel some things have been missed or not taken into consideration as like you said about girls presenting differently and we are slowly understanding that more.  It's so hard all i want is support for my girl to be happy so she can thrive! They did mention they think she would meet the criteria for ADHD so we are starting the processed for that assessment too! 

  • in reply to Kateem

    It's is tricky, where as the school noticed my son a lot earlier, I think my girl (9) is autistic too, but she keeps her head down and flies much more under the radar at school.

    The most important thing just now is the school is supporting your daughter now, but I really agree with you about high school. My son is moving up after the summer, so we were hoping to get a diagnosis in place before that happened (just a few months ago). You have a right to request a second opinion, it's just a don't know the way you go about it. But I hope the ADHD assessment might help with further clarity and answers, and they might say she should be reassessed for ASD too. Good luck!

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  • in reply to Kateem

    It's is tricky, where as the school noticed my son a lot earlier, I think my girl (9) is autistic too, but she keeps her head down and flies much more under the radar at school.

    The most important thing just now is the school is supporting your daughter now, but I really agree with you about high school. My son is moving up after the summer, so we were hoping to get a diagnosis in place before that happened (just a few months ago). You have a right to request a second opinion, it's just a don't know the way you go about it. But I hope the ADHD assessment might help with further clarity and answers, and they might say she should be reassessed for ASD too. Good luck!

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