To lose friends & family re autistic child

My family, in the nicest way, would just keep saying that my kids were just lovely happy children and would brush off any concerns I had. Once we knew there were signs my family got reading up, educating themselves and now they know so well how to help my kids when they are struggling.

At the time i would get frustrated because I already knew they were lovely and happy but I wanted someone to see what i saw. But now I'm just really happy my family have taken it all in and support my kids. Because I am autistic as well, I have a strong sense of justice and won't let go of things that people have done that I wasn't happy about. I want them to see how they upset me, but I realise its just my autistic brain fighting this and there's no need to, things are great now and i don't need to seek justice.

This makes you a great mum for an autistic person! Rather than one saying “why can’t you be more like everyone else”

Came here to say the same. People can be ableist knobs but autistic life can be lonely. Don’t reduce her world further unless really necessary.

Yes, my autistic child is actually highly empathetic, just struggled to cope with his own feelings much less anyone else’s - it wasn’t his understanding of other people’s feelings that was the problem, he just found them overwhelming and so his reactions looked inappropriate.

I think there’s also a difference between a quiet, private and age appropriate explanation to Freddy about his cousin’s behaviour and a loud and public denouncement of your child’s abilities and feelings directly in front of them.

Could your interpretation of what your family think of your DD be skewed by your own worries about judgement? I have a niece who I describe as strong willed and having a big personality and I love her for it, she is amazing. I don't see it as negative at all. You say they are usually a loving and supportive family so maybe they aren't actually as negative as you perceive them to be.
I wouldn't be cutting them off. You and your DD will probably need a lot of support over the coming years. Pre-teen and teenage years with Autistic girls tends to be a really challenging time. Having cousins, grandparents and aunts in your DD's life could really help her through those years that can feel very lonely. You may also need a shoulder to cry on and/or help with childcare through the years.

What's with the "erm nope?" I wasn't rude to you.

I had all these 'he's fine' comments about DS, some were quite hurtful. Now DM now talks about how she sees so many people in our family - especially her DB (who was just labelled an a*sehole from childhood) as autistic. My DB now thinks he's ADHD (DM fits the bill for both. It explains a lot.)

DS's psych told us people are in usually in denial to start, and have to come around to acceptance in their own time.

I don't like people talking publicly about how DS has Autism. It's disclosed where necessary, but I don't like his identity being 'here is DS, he's Autistic '.

Ok I am in this very same situation. My son is globally delayed in all areas, non verbal and autistic, has deep pressure issues so struggles with spatial awareness and is incontinent. He is also tiny 2% percentile. As a result of this, most treat him as if he’s a baby not the 4 year old he is.

going through diagnosis I have been told I’m negatively labelling him, there’s nothing wrong with him, he will catch up, im being too negative. They absolutely are dismissive, undermining and unsupportive. Despite this I do get it, they don’t want to entertain it because they want him to be perfect, it’s easier to bury their heads in the sand than to face the truth.

It’s so hard, but they only see a snippet of what you do, it’s easy to be dismissive. But perseverance is the key. Eventually when official diagnoses came in, as he got to the point where he should start school but he was in nappies, not only non verbal but had no cognitive abilities to understand the basic communication skills, had no ability to mix socially they began to change their view. It also took an incident where they were looking after him and he ran into the road because they over estimated his awareness of dangers, it took a council fight when the council refused to defer him and I had to fight. It took 90 pages of documentation from professionals, from myself, it took agreement from the nursery and the school before they began to change their mind.

did I get an apology? No. Does my son now have a supportive family behind him that understand his needs? Yes.

sadly society, the government are just not geared towards accepting disabilities that are invisible. But don’t give in and don’t hide away your child needs a village, you need a village. I’ve never fought so hard for anything as I have for my son. Fought to understand his difficulties, to get diagnosis, to grieve the loss of an ideal life, to do the day to day, to document (pages and pages hours upon hours) of forms and questions, to engage with professionals, to make family, friends understand, to fight to get an EHCP, to fight the SEND services in my area who didn’t have my sons interests at heart, to take the council to tribunal, to engage with solicitors, then if that isn’t enough to be a mother to three other children and work a stressful job.

it’s utterly exhausting but my son deserves a good life and I will not accept anything less.

I absolutely feel for you and your situation. All I can say is continue what you are doing, never give in. X

Or they changed the subject as the feel uncomfortable or out of their depth or don't want to say the wrong thing

I think you have to be careful not to project your own insecurities around dd diagnosis. I know I was very guilty of that in early days.

Yep I had/have this! Even once my DD was diagnosed it still continued. Even her GP turned to look at her and said “She looks fine to me…..” (in my area the diagnosis process doesn’t involve a GP at all).
It’s usually met with an eye roll or I get asked if I’ve been on TikTok and following the ND “trend” of self-diagnosing. DD was diagnosed by the NHS at age 4.
I’ve also had an ex-friend tell a mutual friend “They don’t even diagnose Autism until they’re at least 8 so that’s bullshit!”
My next door neighbour refuses to allow her DD to play with mine due to her Autism. Apparently she’s concerned that her DD will be influenced to behave like my DD…………..😳

It's likely ignorance of what autism is, and the different ways it can show. People especially struggle to understand high masking ND kids, as they dont see the difficulties.

Chris Packham has done some great programmes on autism- some on his own condition and some on other people. They are really accessible ways for people to find out more.

Also autism is highly genetic. Although some can come from random generic mutations, these tend to be coupled with severe learning conditions. It's perfectly possible to be high flying and academic and also have autism. Black and white views are a common feature. I've got a relative I'm sure is autistic that doesn't 'believe ' in my own kids ND.

I'm a bit confused. In the OP you say you don't want people to link your daughter's behaviour to her condition and tell "Freddy" she can't help it, then in a later post you're annoyed that your sister isn't linking her pinching to autism.

I have lost friends and am distanced from some family as they have not been willing to try to understand how autism impacts my DD.

My MIL angrily told me my children were not autistic, why did I want to label them and they were probably just tired. I don’t talk to her anymore. She’s an ignorant twat. It was so disappointing to realise.

I would say give them a chance, but if they do openly say things that you disagree with then pull them up on it and if there’s no improvement then reduce contact. I agree though that your mother should not be going around telling everyone. Maybe explain it to her that it would be like you going around and telling everyone about her medical history. It’s private information. I don’t tell anyone other than those that need to know about my DCs autism. I just say stuff based on the situation -e.g he struggles with crowds so we won’t be going to that event etc.

I have an autistic child. I share his diagnosis on a “need to know” basis - his teachers obviously know, extracurricular leaders know, some of his friend’s parents know if they’ve had him for an extended play date or a sleepover. He benefits from them knowing. He doesn’t benefit from me broadcasting his personal information to all and sundry, so I don’t - it’s not a secret, but it is his personal information and once it’s “out there” it can’t be taken back. As he approaches secondary school he’s very glad some people don’t know. He has chosen to tell some of his friends, which I’m very supportive of. At no point is it any of his grandparents business who knows what and I’d be furious if they were “celebrating his differences” with everyone or telling other small children about his diagnosis - his differences are his, not theirs. Absolutely I’d take a step back.

Non of their reactions sound malicious, they probably just don’t understand fully as they lack the knowledge and insight and therefore have been a bit clumsy with their words. Also people have their own shit going on so although it was nice your friends asked a few questions, they are likely caught up with their own worries/timetable. if you’re keen to talk more then why not start a conversation

This is exactly what we say to DC2 as there’s a child in the class (reception so age 5 also) with autism. His behaviour is different to the others, other children can see this and it warrants an explanation