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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)

  • 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

  • It can be argued that an autistic parent can be a better parent of autistic children (and autism is largely genetic), because they can directly relate to the problems specific to autism. I had a private diagnosis, which, as has been mentioned, does not need to be passed on to your GP or enter your NHS records. I chose to have my diagnosis sent to my GP, as my children (one autistic, one ADHDer) are adult. Plus, I thought that knowing that I was autistic with anxiety problems would help with things like being inappropriately prescribed hypertension medication when my blood pressure was only high at the GP surgery, due to anxiety.

  • I am a mother, it's never been a problem. I think, unless you showed signs in front of a professional such as a teacher or nurse that you couldn't look after your child, no one will bother you. Of course, this applies to everyone, not just autistic people. I have an incredible bond with my daughter who I suspect is autistic too. She has a routine that really helps her structure and plan her day, I understand if she doesn't want to do something and talk to her about times in life when I've felt the same. 

    Also, as Iain has already pointed out, a private diagnosis doesn't necessarily go on your records if you don't want it to, although I appreciate this isn't always an option for everyone. 

    Check the ACAS website, but I'm pretty sure I've read you don't need to show evidence of a diagnosis to ask for accommodations in the workplace, although I guess some might ask and it would be awkward to say no. 

    There are a few celebrity mothers who are on the spectrum and no one questions them.

  • wherearemyfingers said:
    My other concern is that a formal diagnosis would give reason for people to judge my parenting unfairly and take my children away.

    You don't have to disclose you diagnosis if you don't want to and I susepct if you went privately to get it then no-one else need ever know. Should you do it on the NHS then it will automatically go on your record I believe.

    If you are ok with self diagnosis (there are plenty of free online tests that are good indicators) then this could also give you the self knowledge you want.

    If you need it to disclose to your employer for example then you still don't need to tell anyone else but them.

    Given that autism is a protected trait then anyone discriminating agains this would be open to being sued under the discrimination legislation and any risk of losing your children could only come if your behaviour is causing problems with them. That is my understanding of your situaion and not legal advice (we have to add this sort of disclaimer here).