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Getting an autism diagnosis for dd “not the done thing”.

3 replies

Chiandchiandme · 09/09/2024 11:19

My parents have very rigid views on what is and isn’t “the done thing”.

My Dad has clear autistic traits-he cannot stand disruption to routine or loud noises, he is a bird spotter and religiously notes down any birds he sees in his notebooks, can only wear Rohan shirts, goes on the same cruise ship every year to the same destination so that he knows the itinerary and departure times off by heart etc. He hasn’t seen my children for the past 7 years because my youngest had reflux and allergies, and so was inconsolable the last time he saw her. He was so upset by it that we have not been allowed to visit since.

I was sent to boarding school at 11 for being “too difficult”, and to this day am still called difficult by my parents (although they never explain what “difficult” means). I believe I actually have high functioning autism-I was on a full academic and music scholarship, came third in the country in one of my A-Levels, came fifth in the country in another, and went to Cambridge. I really struggle with noises, textures and maintaining friendships, and cannot read people at all. I find the non-academic side of life very difficult-food shopping, keeping house, remembering the minutiae of having children in school. I do it, and try to do it well because I want to be the one that gets it right, but it does not come naturally to me at all.

My youngest has shown significant signs of autism from being 18 months old. We have our final paediatrician appointment today. My father hasn’t even acknowledged that I have told him that we are on the pathway. He thinks that autism is a label slapped on to “naughty” children from low socio-economic backgrounds to give the children a “get out of jail free card” whatever he means by that!

My daughter’s father is also furious about me pursuing a diagnosis. He believes that because she is toilet trained and has a good vocabulary she cannot possibly be autistic. He sees her twice a month for 24 hours at a stretch.

Why is a diagnosis seen as so shameful by everyone around me? I just want to help her and protect her from the horrendous burn outs I had. I want her to feel loved and cherished for being herself and know that it is ok to hate hand driers, instead of being smacked and told to stop being so silly, or to be told that yo have “ruined the day/holiday/meal for everybody yet again”, as I was as a child.

I feel like the black sheep of the family for simply trying to help my child to understand themselves. Is there any way I can reconcile the guilt and shame I feel for pursuing a diagnosis for her?

OP posts:
Abby212 · 09/09/2024 12:37

Morning op,

How do you feeling about getting your daughter diagnosed? Apart from the opinions of others... do you feel it will empower her and yourself? Do you think you she will benefit from having the diagnosis to give her additional support?

You have nothing to feel guilty about. What you choose to do is coming from a place of love and wanting what is best for your dd

Sjay123 · 09/09/2024 20:52

You do what you know is right by your girl. Ignore your father and her father, I know it's so difficult to be in that position but if they can't educate themselves it's not your place to.

If someone had all the symptoms and signs of diabetes, would anyone in the right mind worry about it being diagnosed as it will label them? No

Yes it's too completely different things but it makes sense to 'get a diagnosis'.

There's a lot of people who still believe Autism isn't a thing, that it's somehow related to being naughty. It's going to be tough for you to navigate this but your daughter will definitely thank you for it. Try and surround yourself with people who can understand or atleast support you.

My daughter got her diagnosis at 5 after 18 months of assessments, she attends a specialist school & is thriving. She's toilet trained, extremely intelligent and sassy. Autism is not the same for everyone. Best of luck with it all x

Sjay123 · 09/09/2024 20:54

Also I'm so sorry for what you endured growing up, that's horrendous but sadly was so common. It hurts to think of that happening still because a child is not understood, and that because their brain literally functions differently to neurotypical people they get punished. My girl cannot do hand dryers, loud doors, traffic, barking dogs. It's hard, very hard but I do everything to help her, I'm sorry you didn't have that!

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