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Newly diagnosed at 41 - Parents unsupported the process

NinjaPanda85

My childhood wasn't an easy one, several trauma's and was a young carer for my mother growing up. When I started the formal diagnosis process I asked my mother to be my informant and to provide basic information, development stages as a baby, nurse check ins etc. She basically refused, saying she that time period was difficult and she "didn't remember" anything ( ie was I born prematurely, speech delays etc etc) . This was really upsetting but I accepted her form efforts which were basically my name, and lots of no or "dont know". There were a few outright errors/lies on the form she filled in though such as she denied that I had ever gone to speech therapy ( I remembered this to the point I could tell you what I worked on and where) there was a lot. Contacted the assessment team to correct what I could and I changed my informant to my wife on their advice. 

Just before my diagnosis my wife had a meal with my mum and my mother was saying all sorts of information that should of been on the forms, essentially proving she knew of my difficulties and had been told by a child specialist when I was 5 years old various concerns but admitting she had done nothing to follow these up or arrange support. She literally told my wife "I've always known he was autistic" . 

I really struggled at school from loneliness, no social skills to grades, I had to work so hard to eventually get decent GCSE'S A Levels then my degree. At no point did my parents ever allow me to think it could ever be anything but a lack of skill/effort on my part. Having support would have meant a lot back then. 

This is the short version of events but basically I'm now struggling a bit with feeling essentially gaslight and neglected by my parents. Its not my way to challenge them on this but just hurts and trying to work out how the relationship moves forward. Both my parents are now ill so im still involved in helping them to a degree(not full on carer anymore, but go through some intense periods sometimes). 

Posting to see if anyone has had similar experiences 

Thanks

  • Hi NinjaPanda85, 

    Welcome to the community.

    I am very sorry to hear about the trauma you have experienced and difficulties during your diagnosis process. I am glad you were able to get diagnosed. I understand it can be life changing to receive your diagnosis and you can read more about it here, if you wish: https://www.autism.org.uk/advice-and-guidance/diagnosis/after-diagnosis/how-will-i-feel-after-receiving-an-autism-diagnosi 

    In case you would ever like to talk about your experiences with a professional, it may be helpful to read our seeking help with mental health and having resonable adustments to do so. 

    I also hope you find the thread that profdanger has linked helpful.

    Best wishes, 

    Alice Mod

  • in reply to profdanger

    Thank you for the detailed reply profdanger, much appreciated. Yes a lot of your reply makes sense, hopefully with a bit of time things will improve on the family relations front. 

  • Good morning from America, NinjaPanda85!

    I’m sorry to hear that your childhood was troubled and that your relationship with your mother is strained. There is another very recent thread where several of us have presented our thoughts on our childhoods here: NAS THREAD ON CHILDHOOD.

    I feel as though I can empathize on a few elements of your story. If you want more details, check out the thread I linked because I go more in-depth there.

    1) Thankfully here in the States you do not have to present an informant on your childhood. Your story emphasizes EXACTLY why I think that practice in the UK is ridiculous and needs to stop. Oftentimes we cannot find reliable - or in some cases ANY - witnesses to our Autistic features during childhood.

    2) One good thing for me is that my mother immediately accepted my diagnosis when I informed her of it. My wife disbelieved it, even when it became officially diagnosed, so my mother saying “Hey, that actually makes sense!” helped convince my wife that it is real. My daughter later being diagnosed cemented that, but I can thank my mother for help in that regard. That’s one way our stories diverge.

    3) If you were to ask my mother, she was an absolute champion of a parent with little to no mistakes in raising me, my sister, or even my half-brother. I imagine she would deflect a question like that with a humble claim, but then immediately launch into an explanation of how using “1, 2, 3 Magic” made her an amazing parent. In reality, I feel as though I was largely ignored by her since I was the black sheep of the family. I have a lot of memories of her prioritizing television and my sister’s friends over lending me any attention. On the other hand, I was a bit of a loner, so it definitely could have been worse.

    My guess is - particularly in your story - that parents often struggle to be informants because they do not want to admit they could have given us more support. In their eyes, assisting you with getting that diagnosis later in life is almost akin to admitting that they failed us. In reality, treatment of Autism looked very different back then than it does now so us being diagnosed later is not a definitive sign of them failing as parents, but that does not prevent that stigma from coming up.