If you are autistic what did your parents do that helped you most of all.

[Crunchytoastandbutter]

My DD (11) is on the waiting list to be assessed for ASD. I expect it will be a long wait, and we have had a difficult start to term (not wanting to go to school, bad mental health, vey anxious).
I love her so much and just want to try to help and support her. But I often feel I don't know how best to help, she's so angry and lashes out at me. What did your parents get 'right' in trying to help/support you?

I would love to know this too. My dd, almost 13, struggles to tell me how she feels, so I sometimes feel like I don't know what to do to help. I guess everybody is an individual, but I hope you get some answers that will help.
With my daughter, I have learned to not push too hard. I don't make her go on outings she doesn't want to go on, for example. My daughter has been out of school for more than a term and I can honestly say that although it terrifies me in some ways, I am so glad she is happy again. She was in such a terrible state, panic attacks, meltdowns etc that I just want to get the basics right before we attempt education. Best of luck OP

Bumping for you as I'm also interested

Really good question!

Following!

Would love to know this too.

Also following 🙈 bump bump bump

I need to know! DD is 11 and has recently been diagnosed. I've bought her earplugs, she's got silicone chew necklaces as she chews her nails and clothes, I bought her a couple of books, 'a different kind of spark' and 'do you see me', novels written from the point of view of autistic girls, which she's read really quickly and seemed to enjoy. I got lots of other suggestions for books too for us both.
I talked to school, who are happy to support without a diagnosis, although she masks at school massively and she's like a different kid with me, the day at school then impacts on the evening. They're trying to help her get organized and maybe give her an exit pass, let her wear earplugs etc, so we don't have the meltdowns we have at home. She's violent and hits me, plus screams, goes mute etc. She won't communicate her feelings, but then I don't think she knows what they are. I'm shit at dealing with the meltdowns, really shit, but I'm trying to learn.
Apart from that we try to do something nice, just the two of us, each week, like watching a series together. She can be really affectionate then and will sometimes open up.
I guess just become an expert if you can (YouTube, books) and be her biggest advocate and cheerleader, bit also make sure she has good boundaries and clear routines/expectations.
Not much to ask 🤦😬

My autistic 19yo says: being aware of what a huge deal it is for a child to be diagnosed, and be prepared to follow the child's lead on how, whether and when they want to talk about it or process it.

He said for some kids, it feels like being hit with an asteroid or told you've got cancer, whereas others might not take it that way. Parents can sometimes overlook the child's very personal reaction to the news, because they're processing it themselves.

Secondly, he says support the child in exploring the positive sides of having ASD: pursue their special interests, embrace their loves and make home a space where they don't have to mask or self-censor. Be care ful with language around ASD and your child's quirks, don't show cringe reactions or embarrassment, so that your child feels like she can stim safely and info-dump, etc, without having to manage herself too much, because she'll already be getting enough of that at school and it's stressful.

He says if your child wants or enjoys aids like weighted blankets or earplugs or whatever, it's really nice when parents just provide it in a matter of fact way and don't make a song and dance about it. Similarly, he appreciates that his needs are just built into our everyday lives, so he can just say "can we turn the music down" etc and we will just do it, rather than him having to spell out that he's having an autistic moment and needs something special.

Above all he says home must be a sanctuary, and the family likewise - he can be himself, and nobody judges him or treats him like he's different.

Don’t know if this is helpful. I once worked with a superb special needs teacher. She really was excellent at her job, the children who went out of class to work with her were always very calm and relaxed and she had excellent results with the children’s progress.
She taught them things like pulling a school tie loose and over your head— so you could just put it over your head in the morning and tighten, straighten.
Same with shirts, I think some of the buttons were fastened after it was ironed. Child could then match up the remaining buttons and holes more easily.
There was a card for each day of the week which was kept in school bag— things needed on each day, or a task that was specific to a day so a change in routine didn’t come as a shock.
When tasks were to be done, say homework, she encouraged the child and parent to write a brief list of points ( she always used long, slim pieces of card— I can’t remember the reason but it worked) The child then put this to the side of what they were writing as a reminder to keep them on track.
Another one I remember was getting the children to mark themselves at the end of a lesson—- for younger ones she had smiley faces, coloured dots for older ones. The children rated themselves on effort, how much they’d achieved and this was never disputed by anyone. She said it improved their self esteem and confidence in their abilities, it was a way of their thoughts and opinions being recorded.
This was a long time ago, some of her ideas might be thought very old fashioned now but I never forgot her, she was a great teacher. And I was struck by how happy and relaxed the children were with her and what a happy atmosphere her classroom always had.

@sadpapercourtesan so valuable thank you

I’ve got a lot of help from my dd’s school by emailing them a letter reaching out for support.

She now has a pass to wave and leave and go to the nurse when she has an anxiety attack, she’s allowed to play with fidget toys in her blazer pocket to help her concentrate, she sees a school mental health advocate who checks in on her, she was flagged to the higher-ups as having these issues and they are monitoring how dd and other children are being supported.

The school arranged sessions for her (within school) to chat to YMCA about her life and mental health and do related activities once a week, which she really enjoys.

My biggest tip for you is to have your talks while you’re not face to face. I get to hear so much when I’m busy cleaning and she’s sitting around chatting to me, or we’re having a cuddle sitting side to side. Just show interest rather than leading the conversation and let them free-flow things that come up in their brain.

Any slight hint of pressure or concern makes my dd clam up. I read a brilliant tip on here actually: Practice your “I’m not at all shocked at this shocking information” face for your mother-daughter talks

@Crunchytoastandbutter
Both my ds and I are autistic though I wasn't diagnosed until an adult so am coming at this from a slightly different perspective.
After a long day of masking at school/work i/we really need to decompress in a quiet room/area that is ours with maybe some quiet music or forest or river sounds doing something that we enjoy that requires no interaction with others and little thought but some concentration for me it's jigsaws (the trickier the better) and for ds it's lego.
Most of the people I know who are autistic have something for some it's knitting or su-doku and 1 friend does rubiks cubes. Basically you find her thing and give her some space/time to do it without asking her questions about her day so she can process her emotions and then hopefully she will come and speak to you about what is bothering her if its something specific rather than just being autistic in a neurotypical world.

@sadpapercourtesan
Please thank your son for those insights. My 7 y/o grandson is autistic and I need all the knowledge I can gain on what he is experiencing.

My parents treated my 'differences' as something to be celebrated and always emphasised that just because others didn't see my worth doesn't mean I didn't have any!

The outbursts and meltdowns can be tough, and it's okay to get frustrated and shout back sometimes. The thing that helped me the most with that was foregiveness and unconditional love. I have been so horrible to my mum in the past because of these issues and she thinks nothing of it, it's all water under the bridge. Now that's a lot easier said than done but it sounds like you are a great parent :)

So many other helpful posts.Thank you all.

Thank you for the bumps 🙂.
And thank you @sadpapercourtesan for your and your DS's thoughts on this. Very important to consider how getting a diagnosis will feel for her (to be honest I haven't thought this through). And your comments on home being a safe space feels really important to me. For me, as a generally happy child with no particular challenges, having a home as a totally safe space was so important to me. It must be even more important if you have ASD and just need to feel safe and accepted. Though it sometimes feel hard to provide that environment when she is lashing out, I hope she feels that about home.

Also routine is a huge thing and lots of repeat practice for new things like taking the trip to the hospital a couple of times before an 1st appointment (but not going into the hospital just now) so that she's more prepared for whatever the change is

@Suzanne999 what an amazing teacher! My son would benefit so much from her teaching style and adaptations.

My DD is 15 (and her dad is ASD too) so we’ve always lived with it, even before diagnosis.
She is elective mute too.
One thing I have always been sure about (and that I tell others going through early days) is to simply accept her as she is and know that she is the perfect form of her. We have never wished for her to be anything other than what she is. As a PP said, become an expert in nit being shocked or surprised by anything she tells you. My DD finds talking hard even at home but once she gets going, there is no filter...
Also, with meltdowns, try to tell yourself that no matter how hard you find it, she will be finding it harder. If she could avoid it, she would so remember she really isn’t doing/saying/being anything just to wind you up - even though sometimes it will feel like she is!
My DD decompresses in her room now - when she was younger it was under a blanket under the dining table. This was fine! She has VERY set routines and they are built into our family life without having a negative impact on her younger siblings.
One thing it took me a while to work out - regarding her anxieties- was not to make suggestions or guess at what was/is worrying her. By doing that, I was just pointing out what possible other things there were for her to worry about. It took me until she was nearly 12 to get there.
I am her greatest advocate but I push her to self-advocate. The world might bend for her but we still role play social situations. We have insisted she learns to be respectful so an acknowledgment of a closed question in school is something she can manage now to avoid coming across as rude. It’s also an easier way to get the attention to move away from you.
She has a medical card to get out of class but recently has not used it.
She’s an over thinker and is now at a stage where she recognised this so I point it out to her now when we are going round in repetitive circles going over a situation. She couldn’t cope with such bluntness until fairly recently. I still spend huge amounts of my time listening to the same things over and over but I no longer feel guilty for thinking about other stuff at the same time now!
And, for the toughest situations, we invoke the ‘time for big girl pants’ rule to get through it. There are something like 86,400 seconds in a day : if 10 minutes are awful, don’t throw the rest of the day away. If it was money, you wouldn’t, so don’t do it with your life!
Good luck! I certainly don’t always get it right, but each day is a new day so we all start over.

Thanks so much for all the comments . They are all very helpful.

@Alysskea thanks so much for your insights - really valuable

@Alysskea likewise thank you particularly for your comment. I try so hard to stay calm and support her when she has a melt down. But I don't always achieve it and then feel like I've really let her down. I hope she understands deep down that I'm doing my best.

DS is 14 and has HFASD, assessment almost complete but he knows anyway. He asks if he is and says it would make sense. They know they are different to other children, having a name for it helps.

DS uses earplugs or big noise cancelling cans at school so distractions don't overwhelm, quiet fidgets (so classmates aren't distracted). Look at Simple Dimples things like that. Ask school to provide a safe space if they don't already have one, and a box of interesting stuff like kids magazines or something about their particular interest (I won't say obsession). School shouldn't say no to any of this stuff, best practice is to put things in place to support while diagnosis ongoing - if not take it to governors (there will be a SENCO one). We moved schools because the first rejected requests to do these things - you have to be your DCs best supporter and advocate and sometimes you have to put on your big girl pants and fight for them. Any talk at school about your DC just 'learning more resilience' is bollocks, you can't teach ASD away.

We don't talk about it much but when DS asks we are very matter of fact, emotional talk is useless anyway. Tell them directly that they can talk to you about anything they like. Be unshockable. Make home a sanctuary where they can be themselves without judgement. Outbursts are a way of coping, not an argument, we learned the hard way that scoldings escalate things massively, so when they are overloaded to the point of meltdown just be there and don't take it personally.

Don't talk about ASD as a negative thing, get upset, wish they were different or wish that it wasn't there, its important they know you don't wish away a part of them that they cannot change. One of DS's friends mother has done this with her ASD DD and the poor child is a mess.

Celebrate their interests and embrace it, lean into it and enjoy all their positive traits and qualities. Don't push them into interests or hobbies to fit with friends or the rest of the herd, it won't work but will make them feel shit about themselves.

Also what has helped with DS is kind of normalising it, telling him everyone is different, unique, the thoughts he has about fitting in are the same for everyone (NT or ASD). He just has a harder time with some stuff, he doesn't think of it as a big deal or some horrific thing because we don't make it one. That doesn't mean we are dismissive at all, quite the opposite but we deal with his needs in a practical way and don't make a fuss. DS knows he's different but it needn't be 'othering'. When they ask if they are like you (or like DH) say yes, because its true. ASD is what he is but its not who he is. He's 14 and likes himself the way he is because we like it, we don't reject a single bit of him and he sees that.

My parents didn't nag me

Wrote bullet point on a whiteboard for each room of "suggestions" could of been anything from like do home work or do a chore but they were only suggestions

sorry OP that was rather long, but to directly answer your questions

lashing out - don't take it personally or escalate into a row by demanding she stops or behaves or whatever. Have you tried the 5 count? Sometimes you have to start forcefully but slowly and calmly 5 things you can see, 4 you can touch, 3 you can hear, 2 you can smell, 1 you can taste? My DS hates this nowadays but it calms him down, we never get to 2.

Support at school - ask (or fight) for what your DD needs and do it now, put in place for start of next term. Don't wait expecting anyone at a school to realise and magically do it for you. Waiting for assessment should not affect that, don't be fobbed off by demands for a diagnosis before anything is put in place. Use phrases like 'senco best practice' and 'duty of care'. We were allowed to trial ear defenders in class for 2 weeks at DS 1st school, the HT fought against it because its the opposite of 'learning resilience' so it took governors to implement but do you know what, in under 2 weeks we had a happy, calm DS who was doing his work in half the time of the rest of the class.

Anxiety may be the coke bottle effect, coping is so tiring for them, masking makes them anxious. Sounds like your DD needs a safe space to retreat to at school.