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Autism assessment

NAS73459

Hi

My 13 year old daughter finally had her assessment 2 weeks ago for Autism.

We have been waiting for 3 yrs for this appointment, but have known things weren't right since she was 2 yrs old. We have been told by 4 professionals over the years (paediatrician, Ed Psych, clinical psych & gp) that if they could give the diagnosis, they would. She is what would've been classed as High functioning, has huge food issues, very sensitive to smells, ocd about things being clean & neat & in right place. Issues with clothing. Not very empathetic. Socially awkward, can come across as rude/ignorant. Can be very literal, struggles with sleep, conversations have to be about her or what she likes, hates change, has meltdowns, flaps hands quite often, very anxious & worries about everything.

She has always done well at school & they don't see any of this behaviour - she gets on and does her work, to the point of hardly talking to her friend. But if there is a problem in the school day, we certainly know about it when she gets home! 

She has a few friends, but only 1 that she will see out of school. 

Her assessment was done online due to Covid & even after all the telephone questionnaires I've done, the Ed psych & gps report, they said because she does well in school & was chatty in the assessment they can't give her an asd diagnosis! 

I feel like they've just picked out these 2 little things & ignored EVERYTHING else. 

I have a post assessment meeting on Wednesday & I want to say I disagree & that they saw the "performance" version of her - big smiles, lots of nodding in the right places kind of thing. She masks so well - to the point of mimicking how her friends speak. As soon as the video assessment was done she was back to her quirky self! 

Will it make any difference? Are they likely to change their mind?

I feel like we've known ourselves since she was 2 & all these appointments & stress & worry have all been for nothing!

Please, if you have any advice on what I can or should say or where to go from here, I would truly appreciate it.

Thanks for reading this far! 

  • I'd ask for a second opinion. 50 mins seems very little time indeed to pick up on all but the most obvious cases. What experience have these guys got with girls? The understanding is now growing that girls can get so good at masking and other compensatory strategies that their autism becomes all but invisible outside of those who know them well. But the diagnostic advancements haven't universally made it out to all professionals. How deeply did they dig into your experience with her? I can see that 50 mins might not provide enough evidence to allow a diagnosis in a lass adept at masking, but if what they are seeing doesn't fit with what you are reporting, I'd expect them to dig a bit deeper until they are sure one way or another.

    I'm going with the Lorna Wing Centre because they have such expertise with adult women and having triaged my paperwork they want A FULL DAY to assess. They are also not happy to do it online because of the potential to miss some of the more subtle expressions. Whichever side of they line I'm on, I think it's going to take that to have confidence that everything has been properly considered and decided upon accurately one way or the other, particularly as I know my social behaviours are a million miles away now from the little girl who played with no one in primary and was bullied relentlessly in school for being different.

    Like your daughter, I was little miss goodie two shoes in my lessons, and melted down regularly at home before retiring to my perfectly ordered room to be alone and dread the ordeal of dinner smells. My accamedic discipline was MFL and linguistics. I've since been a trainer and have learned what pragmatic language is about and how to use it quite well. But I studied it. I didn't intuit it. That doesn't necessarily mean there isn't ASC there and the perhaps the cause of some other difficulties. And I do worry that whilst some criteria are very obvious for me, others are very subtle indeed. 

    Personally, if they tell me it's not autism, I will want to dig deep into what they are and aren't seeing and probing for an alternative explanation for what I am experiencing; not because my theory of what the problem is is so fixed I'd dispute their professionalism, but because I need to understand the truth, whatever that truth is.

    Personally, I'd be asking what they do think the problem is if they don't think it's autism.

    Good luck.

    1. That's ridiculous. I too "did well" in school and masked but the wheels fall off big time outside of a highly structured environment. I can't believe they would box tick like that over something that profoundly affects so many areas of life.

  • in reply to NAS73459

    I can understand your frustration and your reasoning makes sense. My son has just been diagnosed aged 9 and to be honest as he is high functioning I wasn't expecting them to diagnose him. I had him assessed at 18 months based on my own observations, and again aged 4 when his preschool suggested I ask the GP for a referral - both times they said insufficient evidence of ASD. However, 16 months ago his current school suggested he be referred again and this time he got the diagnosis and although I wasn't expecting it, or especially wanting it, I now feel relieved. I've started reading more about how to support children with Asperger's and reading a bit about the challenges ahead. It has made me really sit up and take action to ensure I support him as much as I can, and that we access everything out there to allow him to thrive.

    I think you should stress the reasons why you feel the diagnosis will help your daughter and your concerns about the consequences of not having it. Really hope they listen to you.

  • in reply to NAS73417

    Hi

    Thanks for replying.

    I know it's not going to change anything in her immediate day to day life, but I feel it will help her as she gets older & has to go for college interviews /coping in college & or uni. Coping with job interviews & working, that kind of thing.

    And I just feel so frustrated with the "system" how 4 different professionals can all say they're certain she is, then after a 50min video assessment, they say no but almost ignore all the traits she does have! 

  • Hi, sorry you've not had the result you wanted and good luck for the post assessment interview. Can I ask why you want the diagnosis? What do you hope will change as a result? If you could articulate this to the person you see for the interview it might help them to change their mind. Fingers crossed! P.S. I am writing with very little experience of this sort of thing and very new to the world of ASD (bar living with my son for the past 9yrs) but it just struck me that I'm not sure what you hope to achieve from what you wrote above and if you can explain it to them you may be more likely to persuade them, if that makes sense.