How do you with relatives who don’t believe in DS’s diagnosis..

[JKCR2017]

I have DS 7, asd diagnosed when he was 5. I want go into great detail but looking back his issues were obvious. Lack of eye contact, struggling with noises, crowds even as a little baby. He was non verbal and lacked understanding until 5 and still at 7 has no sense of danger and has some pretty extreme obsessions.

Anyway, I split with his dad when I was pregnant but he has been in his life but he’s never been around him for long periods of time (only a few hours, occasionally overnight).

My ex and his family do not believe he has autism. I think this stems from his Nanna. She isn’t old, only in her 50s but she’s extremely old fashioned in her view that autism doesn’t exist and I also think she has made my ex believe this also. So I get paranoid that they think it’s my parenting (I know it’s not) but they tell other friends and relatives I exaggerate it etc.

If they knew anything about autism and getting diagnosed with it, they would know it can take months of years (it took us from age 2 until 5 to get diagnosed).

I have tried educating them but they refuse to talk about it.

Really disheartening when myself and my Oh (been together 6-7 years) do all the hard work every single day and they just speak nastily about us behind our back. It’s hard, we aren’t perfect, but we ty our damn best at bringing him up with little support.

How do others deal with this?

[Shybutnotretiring]

Do you think it's maybe because they are autistic themselves? My mother said to me, 'what's the point of an ASD diagnosis [DS is autistic] when there is no cure?'. I said (non-confrontationally or so I thought) that, no, diagnosis won't change what you are but, say, if you had sensory issues and couldn't bear certain noises it was helpful to understand that it was part of your autism. She said she had always been far more sensitive to noise in nightclubs etc than most people. I was amazed when she demanded to know 'does that make me an 'abnormal' person?'. Clearly hit a nerve there!

[drspouse]

I met someone who was doing research on "X" difficulty and people who couldn't do X. She told her mum this was what the research was on and her mum said "gosh people can do that" and her mum had this difficulty but had assumed that nobody else can do that anyway.
So it is entirely possible that some family members just assume this is "how everyone is".

[FanFckingTastic]

Personally I would be quite tough with them. ASD and other spectrum disorders are not something that you 'believe in' like Santa or the Tooth Fairy. I would challenge any derogatory comments or behaviour by them head on. Remind them that this is a medical condition that has been identified and researched for decades and has been diagnosed by doctors with years of training. Remind them that your DS will need their understanding, help, patience and support and that as their family you know that they will do this for him. If they need help understanding the mechanics of it or have questions then there are loads of resources (Ted talks, books, literature from medical professionals etc) but if they are refusing to acknowledge his condition then not only are they undermining you as his Mum and primary care-giver but are being detrimental to your son. He needs people around him that will support him, advocate for him and help him be the best that he can be. If they are not prepared to do this then (in my opinion) they don't have an active place in his life.

[April2020mom]

Personally I think that it’s time to cut ties. I’ve also had awkward conversations with some doctors, relatives and friends who don’t understand Spina Bifida and dwarfism. One particular conversation comes to mind here. My son has Spina Bifida. Lack of mobility and virtually no leg movement either are two of the characteristics that come with his particular diagnosis.
Our pediatrician asked me to complete the standard development questionnaire multiple times. So I ended up being extreme with her. I told her I was prepared to cancel all future well checks until she quit making me fill out a boring form. I hated that form. My son and daughter’s disabilities are fodder for some pretty interesting discussions.