If you are autistic what do you wish your parents had done differently

[Timeforanewname2014]

Just as the title says really ... my daughter has recently been diagnosed and I'm keen to know how I / we can best support her. Thank you

Or what did they do that looking back (or at the time) you reallr value

Bumping and following because DS is autistic. But I can't answer your OP.

Thank you 🙂

Have you looked at the Autistic Girls Network @Timeforanewname2014 ? It's been invaluable for me as a parent to a late-diagnosed daughter.

Also following.

Mine refused to go to school and is currently in severe burnout. Lots of love and tlc for her atm.

Recognise that I needed structure and routine to feel secure and more communication about the stuff that couldn't have a routine.

I wish I had been diagnosed with dyslexia earlier too.

I was literally told " There's something wrong with you" by my parents through my childhood and adulthood until I cut them off. It still affects me to this day, at 41 years of age. When my DD was diagnosed at 8, after going through some behavioral therapy, she said she didn't want it because it made her feel like something is wrong with her. I support her by focusing on her strengths. My advice is to celebrate who they are no matter what path you take. It's a gift if you choose to see it like that. I would want any child to see themselves as a gift with so much to offer the world. Also, always listen to your child. Doctors and therapists are not always right and do not always know what's best. Not to discount them entirely, but listen to your child and respond immediately when they speak up. Go ahead and ask them what they are feeling and often. Communication is important no matter how well they communicate. Also, relax. Worrying will only make them feel like something is wrong. You'll figure it out. It's a big relief to know what's going on, especially when you figure out how to do life in a way that makes them happy and fulfilled. Also keep an open mind to multiple diagnosis. I think my DD is also dealing with ADHD and I feel awful I didn't realize it sooner. She's 13 and about to be tested. Everything is harder to figure out with girls because they only do research on boys. Just keep and open and positive mind and don't be afraid to pivot or adjust as needed, especially teenage years.

As a teenager, addresses my eating disorder and self harm, but it was different times and it’s not their fault.

Not being in denial. Not being terribly ashamed. Not telling me to ‘keep a low profile’ at school as they didn’t appreciate staff contacting them with concerns. Not being so concerned about looking like bad parents that they minimised my difficulties. Not telling me to avoid seeing the school counsellor because ‘you don’t want people to think you’re crazy, do you?’

Just by posting here, you’re showing that you’re streets ahead of them.

This too.

Thanks for the replies and suggestions. WhatsotWiggle yes I have looked at that, they are a super helpful resource. We have read a lot of books too but I can't shake the feeling that I am handling some bits wrong so keen to find out as much as we can.

My daughter was diagnosed at 14 too, and I also feel the guilt that we didn't see it sooner. Get what you say about being hard to recognise in girls too. Until a few months ago we only knew about the 'typical' / boy presentations.
I like the relax comment 🙂 this feels like good advice as I do worry about her so much and fear this comes across to her in the wrong way.

Hugs to you - it's really hard on the whole family. My daughter struggles a lot with school too and is often off but still there (at the moment - for who knows how long)

Give him whatever he wants to eat because his food choices are so limited.
It’s never a proper meal, he changes every week what he now doesn’t like and top him up with fruit and veg inbetween.
Organise his whole life because he doesn’t remember 99% of things.
Spend a lot of time outside and swimming multiple times a week as he loves gliding along the bottom of the pool.
Tell him everyday what the plan is and keep changes to a minimal where possible
good bedtime routine
he has a weighted blanket and sensory sack, as well as fidgets etc, sometimes he wants to sleep in a box, so I let him.
pick battles over behaviour and understand that there is normally a reason for it, so sit down and I start from the moment he gets to school until he gets home and usually along the step by step of his day we will find the issue
Homework is optional
Take interest in his interests no matter how random it is and it changes often
On weekends regardless of weather I let him chose his outfits, he’s shorts and T-shirt majority of the year
If he has a meltdown in public I pull him into my chest and hold him so he can’t see around him until he calms down, allow him to wear hats and sunglasses wherever if it helps him feel safe
i never force him to hug, shake hands etc even with family because he doesn’t like to be touched
When out and about he will only hold my left hand and I have to squeeze it super tight so even if it hurts my arm I do it.
Haircuts I have to book a week or so in advance and remind daily it’s nearly here.
no surprises even on birthdays, not worth it

I myself only got diagnosed as an adult and sometimes we trigger each other but as he’s in secondary and able to understand I tell him I need 5 mins to calm and he is able to walk off too

Also just to add to my essay, he has struggled academically his whole life and sometimes that makes him feel like crap but his creativity, art etc is incredible so we focus on what he enjoys and what he’s good at too

Thank you. We tell her frequently it's not something to be ashamed of and how proud we are of her. Good to hear this might be helpful. Sorry you had a hard time.

Oh yes, this too. It's so common to go inward when struggling. I went down that path as well. As soon as I saw signs of possible self harm I really stepped up for my DD. She was ready to throw herself from a window at 10yo, and when she had a friend trying to lose weight she started mimicking and almost went down that path. Mimicking is really big with ASD girls. Watching for self harm in any form and for mimicking because it can be harmful as well. Probably our biggest struggle is social stuff, which is hard for anyone but especially difficult with ASD. We focus on balance, mindfulness, getting out into nature, staying off social media, talking about negative messages in movies and ads, general health stuff.

Sorry if I don't reply to each individual message - I'm reading and valuing each and every reply. For those who had a hard time as an autistic child or who are having a tough time with their own autistic child sending you best wishes

Not me but a friend: he was diagnosed at three but because he was extremely high functioning and highly academically intelligent (and in his own way, good at masking) his parents assumed he was ‘recovered’ from autism by his teens. He found it very distressing when OCD hit at times of intense stress or profound change. Also because his parents were health professionals they put him in for several research studies and I think he felt a bit like a lab specimen at times. He found it difficult to talk about his condition at university and only now, 30-odd years later, is he able to talk honestly about how he is.

Don't tell her the men in white coats will take her away for stimming.

Don't repeatedly tell her she's got something wrong with her.

Don't tell her if she at least pretended to be more like everyone else, people might like her.

That's what I wish mine had done differently for starters.

I wish my parents had listened to me when I told them my needs and my boundaries.

Not sent me to school but read up on self directed education. I basically dropped out in Year 10 anyway.

Gently pushed the routines and skills that are useful to adult life so I had the skills to blend if I wanted, so appropriate clothing, how to use make up, how to make small talk. Showering every day etc. I do some of this with my own autistic six year old now. I wish they’d pushed driving harder. It would be useful now.

Something they did well was allow me the space to grow as a young adult, they were pushy enough that I couldn’t stay home and do nothing but they supported me to stay home and dither while working in casual jobs until I decided on Uni at 21 and they supported me for that first year and then I flew. Autistic people often take longer to mature, those extra years helped a lot.

Honestly I also know now that my parents couldn’t have been who I needed them to be, that clearly autistic traits run though the generations. My mother couldn’t teach me when to moderate my loudness or how to make friends, those aren’t easy skills for her and now as I raise my own autistic child and one who may or may not be NT I realise that as an autistic parent I can’t be who they need me to be either. Hopefully I can be good enough.

my parents didn’t know why I was different. There were no diagnoses for girls who could achieve academically back then. So I can’t completely fault them.

what they did poorly: they yelled at me for behaviors that I couldn’t really control. I needed support and help channeling stimming and tics. They did not advocate for me at school.

what they did well: they did not leT me use being different as an excuse to not do well. I got good grades and high test scores, I went to university, and I got a great job . There was never any question that I was going to accomplish everything I was capable of accomplishing, despite being odd.

i try very hard to advocate for my dd. I get her assistance when needed, but I also look for ways to help her modify processes ourselves. Constantly try to be thinking like an OT. I also try to set high standards for her because the reality is that she is exceptionally intelligent and just has to learn to navigate in a world that wasn’t built for her.

I'm autistic, diagnosed in adulthood. I wish my parents had:

Found me alternate educational provision, or at least not made me feel terrible about the fact that I hated school and was too anxious to go. Instead I was told that I'd never get a job if I didn't attend school, among other things. Not true. The school years were absolutely the most miserable of my life. I self-injured regularly because I was so overwhelmed and unhappy, and still 'you have to go to school' was all I heard. I wasn't even allowed to try a different school.

Not been so dismissive of my special interests. Sharing them or feigning enthusiasm wasn't necessary, but telling me they were abnormal and a waste of time hurt. (I actually taught myself web design age 14 to make a website for a niche interest I had a lot of knowledge about. My parents just mocked it all.)

Not shouted so much. To this day I have an involuntary 'freeze' response if I'm shouted at, because as a child I knew that no matter what I said or did once it started, the yelling and name-calling would continue. I know nobody likes shouting, but the sensory overload made it worse for me.

Not lied to me whenever it seemed convenient because they thought that 'children don't believe their parents anyway'. No, to me they were my most trusted source of information about the world, so when they said things like 'if you move to another country when you're older we'll never see you again' or 'God knows everything you're thinking' - I believed it. Literally. (They weren't religious people who actually had that belief, but cultural Christians who liked using God for behavior management. Backfired when at age 8 I became incredibly anxious about needing to confess every 'bad thought' I had so I wouldn't go to hell...)

Been more careful with language. When I used to do things like stim I'd be told 'people don't do that' and my little autistic brain deduced that this meant I wasn't a person, because clearly I was doing it, and I liked doing it. From age 4 I used to fantasize that I was really an alien and one day my alien family would come and take me 'home' where people would be more like me. I really felt that isolated, and it's sad to look back on now.

My parents weren't bad people! And I don't think they knew how to handle the child they ended up with - very different to either of them. I'm old enough to have moved past all of this - but I do think my early adulthood would have been very different if I'd had more support and been valued for the person I was as a child.

I just wish my parents could have....liked me.
We're NC now. It feels good.

If you are autistic what do you wish your parents had done differently

Not yelled at me (father) & criticized me (mother) so much, and not openly disapproved of me so much. Not blamed me for behaviors I had no control over. Not shamed me for not acting ‘normal’.

Not compared me to other kids and made sure I knew I did not measure up. Not sided with teachers who proclaimed ‘she is smart, but lazy, and she is not trying hard enough’. Not made me feel like an utterly strange, ugly, unlikeable outcast.

However, this was in the late 60’s/early 70’s when there wasn’t much understanding of the autism spectrum and Asperger’s wasn’t acknowledged/diagnosed. So they likely felt they were stuck with a child who was deliberately difficult and not what they wanted.