To lose friends & family re autistic child

[MumBlingAgain]

This may end up being long so please bear with me.
One of my daughters is autistic. Spoke "on time" and fluently but early on we noticed behaviours which pushed us to seek a diagnosis.
It was new and worrying for me so I confided in a couple of friends and family members. Reactions varied from:

• my sibling: "everyone has a different personality, nothing is "wrong" with your child, she just has such and such personality traits" (Note: I never said something was wrong with my child, just that she was autistic!)
• my closest cousin: "your child is not autistic, that's such an overused label these days, your child is fine, they are sociable and smart" (Note: the diagnosis was carried out by qualified medical professionals).
• another friend treating it as if it was a cancer diagnosis (At least she didn't try to tell me what my daughter is and is not!) a couple of other friends have just asked a question or two then gone very quiet and I get the feeling they think I'm crazy.
• my parents initially suggested I should see a psychologist for being "so anxious" and that my parenting was to blame for my child's emotions. My mother was adamant my child was smart, capable and "normal" (I hate that word so much by now!) until she spent the day with some distant cousins who have a neurotypical daughter the same age. She called me the same week urging me to seek help for my daughter and has been educating herself ever since and of course "accepted" the diagnosis when it came. Which of course is commendable (the educating herself bit) but I still feel bitter about how it came about.
• I should also mention that I have a couple of wonderful mum friends who have just listened and continue to treat my child in exactly the same way since I shared with them, which has taught me to be choosy about who I share with

Now my mother wants to tell everyone about the diagnosis and I have asked her not to. She is claiming I am not helping my child by being "secretive" and is suggesting I am "making my daughter's autism a problem when I should be celebrating her differences".

Great sentiment. 😂, but the reactions so far make me feel like I can't trust my family to behave appropriately in front of my child. She is still young (only 5) and unequipped to deal with prejudice. I don't want an inconsiderate adult mouthing off in front of her with "oh, don't cry Freddy, your cousin hit you because she doesn't understand your feelings / doesn't know better".
Even worse if children from the family overhear ignorant statements and repeat them.

So I guess my post is to ask: WIBU to reduce contact with my otherwise lovely family because I feel so bitter about their reactions (either denial or as if it's some problem with my daughter's personality!) and I want to protect my child from their ignorance?
My family are usually lovely and they probably think they are the best and most supportive but I just feel so sad about their reaction.

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.

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.

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.

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…………..😳

I don't think it's genetic in my daughter's case. She was born very prematurely and she has some (not severe) learning difficulties though if you haven't seeing her try to hold a pencil you wouldn't realise.

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.

That's a good point. Thanks for helping me see this from a different angle

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

Erm... nope.
but i do find people who say autistic children "don't understand feelings" ignorant.
my daughter may have challenging behaviours but she does understand feelings!

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 '.

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

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.

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.

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.

It's a good point. I may be overly sensitive about their behaviours because I'm feeling a bit protective of my daughter.

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

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.

She does sometimes pinch other children to try and get their attention.
Not hard, as in she has never made another child cry - but still, it's not good behaviour. It started when she was three and we worked on it and it now rarely ever happens (has happened 3-4 times since the beginning of this year at school, never happens at home with siblings anymore).
which just goes to show that she can work on her behaviour, she does understand feelings, and by the way, there are many neurotypical children who pinch for other reasons etc.
The point I was making about my sister is that she was wrong in saying my daughter pinched out of jealousy, and she could have been a bit more patient recognising that it takes my daughter a bit longer than other children to change some of her behaviours / that she is not always at "milestone" when it comes to social behaviours.
Don't see where I am being inconsistent here.

You and your family sound lovely! I can empathise with the sense of justice.

Agreed! How is your son doing now?

As a Mom of an ND child, I can say with certainty that A- Most people are ignorant as to what being autistic means and B - that it is up to nobody but the person themselves who is told about their diagnosis and who is not.

Of course you need to make sure DD doesn't feel shame about it, but it is not up to your Mother to spread news that isn't hers far and wide.

When DD is ready to tell people, she will. Until then, it's best to keep things close and on a need-to-know basis.

Part of my job involves educating people about Autism and there are a few things here that are quite damaging. @MumBlingAgain your family need educating but it’s not necessarily up to you, you get to decide if you want to or if you prefer to distance yourself.

We are not all “ a bit autistic” and by saying that, we minimise the experiences and struggles of autistic people.

Autism is not a Learning Disability, though some people have both.

Anxiety cannot cause Autism- it usually is hereditary and 9/10 one of the parents is (diagnosed or not) Autistic.

The friends who treated it like cancer- just ridiculous but also likely to be ignorance rather than malice.

I understand your need to be protective, you may need to fight your DD’s corner many times but please also remember to listen to her. I missed her age but she should be the one to decide if people know about her diagnosis; most people tell people on a Need to know basis. Be really careful as well not to fall into not disciplining her, the way will be different but people sometimes forget that autistic children thrive on boundaries.

I completely agree with you!
My daughter is 5.
We have found that she does respond to being disciplined but using different approaches than her siblings - e.g. remove her from situations where she may be lashing out inappropriately and wait / support her until she has regained control of her emotions before expecting her to apologise.
We see progress in her behaviour over time, it's just more challenging to get there as we are constantly adjusting and calibrating our own behaviour.

Really well. Still struggles with big feelings but is able to express himself in much more appropriate ways now and I don’t even remember the last time he pinched or hit anyone, I think it was several years ago. He’s thoughtful and kind and has a lovely group of friends. He’s a very different child at ten than he was at age five!