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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!!! 

  • in reply to profdanger

    Thank you! Yeah lots of people have told me to trust my gut instinct and a second opinion can help give some clarity its just nearly impossible here in the UK and unfortunately i dont have the finances to pay private as it can be 1000s of pounds! 

  • 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 Dawn

    Thank you so much for your response and sharing your experiences! I definitely agree with you about how each area of nurodivergent conditions can echo each other which is why i just feel like im in this cycle going round in cirlces! 

    As for school they are amazing! They do support her massively with extra adult help work is borken down ect, she has movement breaks and timers to help her stay on track and they are very undersyanding and know hownto handle her when she is disregulated but this is why i am so worried that without diagnosis or explanation she wont recieve the help she needs at secondary school.  

    Honestly i really dont care one way or another if she is or isnt autistic i just purely want to make sure she gets ythe right support so she can be the best she can be 

  • 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.

  • If you have any doubts, yes a second opinion is well worth while.

    There are a couple of points to bare in mind, though.  Since your daughter has a dyspraxia diagnosis it is already evident that she is neurodivergent.  It can be complicated when someone has more than one form of neurodivergence.  I am both dyslexic and Autistic, for instance.  Some features can overlap and be mistaken for another or mask the presence of another co-existing form of neurodivergence.  Throughout my life I explained away a lot of things that are there in fact because I am Autistic (which I had no clue about) as down just to my dyslexia, which I did know about.  Notoriously, ADHD (and sounds like you suspect she may be an ADHDer) and Autism get confused and one tends to hide the other by pulling in the opposite direction, whilst they do also share features.  My ADHD other half and I both have a lot of sensory stuff going on, an intolerance of pointless small talk and are excellent pattern spotters, for instance. Yet he isn't Autistic and I'm confident I'm not ADHD.  This sort of thing can make the job genuinely difficult for clinicians.

    Some individuals do have high numbers of Autistic traits without actually being Autistic.  My son for instance thinks just like me!  Soooo very logical and very blunt with his honesty, and gets socially tired.  But then, he also engaged in imaginative social play that didn't involve lining stuff up and was confident and popular in school.  A few little sensory things, but not much to speak of.  Errrrrr, I'm not a clinical psychologist and wouldn't like to say whether he is Autistic or not, but some marked traits are definitely there. Well, he is my son!

    Also, the quality of NHS assessments are known to vary.  Our knowledge about presentations in girls and women is getting better by leaps and bounds, but sometimes clinicians aren't entirely UpToDate.  It's impossible to say whether yours were skilled enough to pick their way through any masking or not etc.

    So, your little girl could well be Autistic and they missed it.  Or she could well not be Autistic but have a battery of other neurodivergences which are similar to in some respects.  It's only right and proper that you should get clarity given the complexity of her case.

    If you do decide to try for a second opinion, personally I would take on board the reasons that they did not give her a diagnosis and consider whether there was in fact evidence of those things which perhaps wasn't put before them or made clear enough and start collating that.  Observations made in school reports, family photos of her at play etc.

    But, whatever the truth of what her brain is like, what's important is that the school respond to her need.  If she's got co-ordination problems whether because of dyspraxia and/or Autism, they need to respond.  If she has organisational, sensory or social problems whether due to ADHD and /or Autism, and/ or dyspraxia, the school need to respond.  The most important thing is that they listen to her and you and respond to her need whatever the truth of its label.

  • 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.