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Is it safe to seek diagnosis as a mother

wherearemyfingers

I want to get a formal diagnosis, but I am worried about the consequences, in terms of being misinterpreted when I advocate for their care and having my children taken away.(my eldest has the same behaviours as me, while the others have medical needs that involve trips to the hospitals and speaking to specialists).

I am in my early 40s and have going through perimenopause since my mid 30s. I've known I am autistic for years. When I was in my 20s at uni, a therapist suggested I seek diagnosis, but my mother told me not to label myself. My parents are still quite hostile to the idea of any of their family having a diagnosis: my sister is seeking an ADHD diagnosis for herself and an autism diagnosis for her daughter, and my mother has made dismissive comments about both. I want a diagnosis for my own benefit: I'm not weird or broken, this is a normal way for my mind to function. And I want to access self help resources, to help me get back into work and be productive, but I feel guilty and an imposter without a formal diagnosis.

My other concern is that a formal diagnosis would give reason for people to judge my parenting unfairly and take my children away. We're not an at risk family or have ever been on social services radar, but I have this irrational fear regardless. My girls are happy, they know mummy thinks different. We have a happy home. But I can't help worrying.

That and I find the NHS form for diagnosis very hard to fill in: if it was "write a 100 page essay on your specialist subject" I'd ace it. I can't rely on my parents for interviews, as they'd deny I had any problems and was just a 'good girl' and smart (actually isolated, bullied, minimal/non existent friendships, bashing head on wall, "good girl" who always did what they expected of me, repetitive behaviours and hyper interests).

Sorry for the stream of consciousness, I'm not very good at editing down what I say, I feel like I have to include everything.

(my user name is because, when I get overwhelmed, I flex/twitch/play with/tap/hurt/flap my fingers so I know where they are, and that makes me feel better)

Parents

  • Hi,

    I've just been through an NHS diagnosis for Autism, and I'm also a mum. I had a private assessment years ago and was diagnosed as autistic so have been open about this, but my GP wanted me to also do an NHS assessment because I've scored highly for ADHD as well.

    The assessment I had was really thorough, and the assessors were mindful that I was a 51 year old masked woman with low support needs. They gave me the choice at the end of the assessment whether I want the report forwarded to my GP or not. I will do, but this has been my decision and I would hope this would be an option for you too. During the assessment, my sister was contacted and I know this was the assessors preferred, but they can't force you to do this. There is no way in a million years I would have had my parents involved as like yours, they would have just said oh she's totally fine. They were keen to speak to someone who had known me since I was a child, so a friend or other family member would be okay.

    When there have been issues at school with my children (one who has autism and one who has been referred for an ADHD assessment), I have found it useful to say I'm autistic but this is obviously a personal thing. 

    If there's anything I can help you with about the diagnosis or being open as an autistic mum, please let me know! In my experience, it's been nothing but positive and like you, I felt like an imposter for years. 

    Good luck with whatever you choose to do.

    Leni x

Reply

  • Hi,

    I've just been through an NHS diagnosis for Autism, and I'm also a mum. I had a private assessment years ago and was diagnosed as autistic so have been open about this, but my GP wanted me to also do an NHS assessment because I've scored highly for ADHD as well.

    The assessment I had was really thorough, and the assessors were mindful that I was a 51 year old masked woman with low support needs. They gave me the choice at the end of the assessment whether I want the report forwarded to my GP or not. I will do, but this has been my decision and I would hope this would be an option for you too. During the assessment, my sister was contacted and I know this was the assessors preferred, but they can't force you to do this. There is no way in a million years I would have had my parents involved as like yours, they would have just said oh she's totally fine. They were keen to speak to someone who had known me since I was a child, so a friend or other family member would be okay.

    When there have been issues at school with my children (one who has autism and one who has been referred for an ADHD assessment), I have found it useful to say I'm autistic but this is obviously a personal thing. 

    If there's anything I can help you with about the diagnosis or being open as an autistic mum, please let me know! In my experience, it's been nothing but positive and like you, I felt like an imposter for years. 

    Good luck with whatever you choose to do.

    Leni x

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