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Talking to 9 Yr old pre-diagnosis

NAS77090

I am stepmother to a 9 year old. Her mother has taken steps to have her assessed for ASD and she has recently been successfully referred. However due to waiting times the assessment could be as much as 2 years from now. My concern is that her mother already seems to have told her that she thinks she might be autistic, and she has become quite attached to the idea. She seems to have been given enough information to start labeling herself and her behaviours but not enough to have a fully rounded understanding of autism and how complex and varied it can be. Myself I don't know if she is autistic or not, but let's say I have strong reason to think it very possible that she is not, and that the specific behaviours and difficulties she does have are caused by other factors. I've tried to gently remind her that the autism diagnosis is just possibility we are looking into, not a definite, while still validating her experiences, but she becomes a bit angry and upset when I remind her of this. It worries me that she may spend the next two years integrating ASD into her personal identity only to find out she is not autistic. Does anyone else have experience or advice on how to handle this? 

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  • I understand that you are worried about her ‘fixating’ on being autistic, but if she really feels that she identifies with other autistic people/traits then it is really beneficial for her. By researching autism, she can understand who she is and feel more content. Even if she doesn’t get a clinical diagnosis, she can still identify as autistic. Formal identification doesn’t change her neurotype, it just confirms it. 

    The fact that she is researching autism in such depth suggests that she is autistic anyway because of the tendency to hyper focus.

  • in reply to Ausomely Autistic

    Thank you for your reply and this perspective. I find it very helpful and reassuring. I guess you are right that in the end the diagnosis does not matter, and that if she wishes to identify as autistic and finds it helpful perhaps that is no bad thing. I am certainly grateful that she doesn't hold negative perceptions about the idea of being autistic. To clarify she isn't researching autism, I only meant that 2 years is a long time to build up certain ideas, accurate or otherwise. In fact I think the little information she has means her idea of ASD is quite simplistic and innacurate, hence the tendency to use it as a device to excuse any and all misbehaviour or further distance herself from her peers. My initial thought was to provide her with more age appropriate information about asd that she can better understand and perhaps make a more informed decision about whether the is something she relates to or not. But with her showing such a marked desire to be seen as autistic I've hesitated, wondering if this would only encourage a fixation on something that may not be the answer for her. Without going into too much detail, I believe there are environmental factors and trauma that would explain her particular difficulties without ASD being a factor and I worry that focusing on ASD would further minimise the chance of addressing this. Unforunately my husband and I don't have an amicable enough relationship with her mother to raise this. However I think your reply had reassured me that her learning more about ASD herself can be no bad thing and might help her make better sense in her own mind about whether this really is something she identifies with or not. So I will invest in some age appropriate reading! Thanks :) 

  • in reply to NAS77090
    NAS77090 said:
    To clarify she isn't researching autism, I only meant that 2 years is a long time to build up certain ideas, accurate or otherwise

    I agree that 2 years is a long time to wait but her understanding of autism could change a lot in that period. You said you want to show her some age appropriate information, I would recommend these videos for children:

    https://youtu.be/RbwRrVw-CRo


    https://youtu.be/VAogdfYPstU

    This book may be relatable for her:

    M is for Autism 

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