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?

@whysoserious123 what a good idea

@whysoserious123 the whiteboard idea I mean. Thanks so much. I’m literally writing these down for my dd likely going to get a dx in next 4 weeks

I have no diagnosis but so many traits other people think I'm autistic.

To me my life is like living in a foreign country where you don't know the language and customs.

I take things literally to the point my carer tells me something is a joke before he tells me the joke.

Using the foreign country analogy take toilets. I know how to use a public toilet, but if you are outside the UK you may have to buy toilet tissue before going into the toilet.

You may have to put money into a machine and get a pack with a toilet seat cover, paper, soap etc.

If you are in Japan you may not have paper but you do have an option for warm water to wash your bum and then dry it.

In some countries you are expected to squat.

Imagine if you are somewhere familiar like your work place and a couple of times a day you need to use the toilet, but you don't know whether it will be a squat, have paper, expect you to have brought your own paper etc.

So you don't just think, "Oh I need to pee, the toilet's there I'll be 5 mins"

You go through each scenario in your head, you watch other people to try to get an idea and you do this every time. It becomes a mental load and that can cause anxiety.

I've also heard of it being described as you being either the only person in the room who doesn't get something or you are the only person who does get it.

Does that make sense?

Sometimes things have to be explained differently eg MFL tests at school. It's not that you are expected to lie in the test but the test is of your ability in the language so even though you have one sibling, in the MFL you will get marks for saying you have an older brother and a younger sister and an aunt who lives in a different country.

It's not telling the truth but it's not telling lies either.

Just thought I’d share this. My adult autistic DC shared it today.

Following for my dd

Definitely following this, feel like I'm failing my son at times as I struggle to respond to him how he needs me too. I'm not really even sure how he needs me to respond. Thanks for posting xx

Encourage your child to talk and listen to what they say. Validate their feelings. Dh and I used to clash with DS during meltdowns whereas now we can take a step back, understand he doesn’t mean what he’s saying and we can approach it calmly. DS benefits hugely from writing things down especially if he’s struggling to speak or articulate what he actually means. We also practice mindfulness techniques, breathing, tracing the outline of your hand, the 5 things you can see technique mentioned above.

With DD it’s very different, if she’s struggling I will literally sit on the floor with her and I rock her, calms her down much faster, really grounds her. Doesn’t matter where, supermarket, shopping centre. Which also means ignoring all the comments from arseholes walking past. Another point, do not let anyone call your children names, mock them etc it’s surprising how many people do this! Including family!
We take her ear defenders everywhere which helps her so much.

Start to learn what your child’s ‘safe’ places and ‘safe’ time limits are. We know where our children are happy so Grandma’s house is just an extension of ours and they can spend hours there and we plod along just fine. But if we go to say, auntie Betty’s house, we can last maybe an hour and then we’ll need to leave. People may be upset you can’t stay longer but it’s how it is, don’t make your child suffer just to stay longer.
Looking back now (to before diagnosis) I can remember times my children were struggling so so much at a party or gathering and we would just think oh they must be teething/tired/maybe under the weather when really they were completely overwhelmed and in meltdown.
I have several videos of singing happy birthday to DD at her birthday parties and she is so upset, hands on ears etc and I feel so bad. Then I have one video, her 4th birthday I think it is and she has a completely plain, £2 Victoria sponge from the petrol station down the road and her brother and I are quietly singing happy birthday to her, the lights are off and she is soooo happy and enjoying it so much. We ended up singing about 6 times and she’s loving it. The previous birthdays we’ve had 20+people in the room!

FOOD! Let them eat what they can. It’s a major thing for us. The kids have about 5 safe meals and we rotate them. Yes people comment but they don’t live your life. No they won’t eat it if you just leave it there, they won’t eventually get so hungry they’ll eat anything. No they don’t have to have a ‘dolly portion’ of everything available as that’s what you do in ‘this house’ unhelpful family member.

Also be their voice if/when they don’t have one. With family, friends, in public and at school. It’s so so important that they know you have their back, always.

Hi
A book was recommended to me recently called Can you see me? There a follow up too called Do you know me?

www.amazon.co.uk/Can-You-See-Libby-Scott/dp/1407195670/ref=sr_1_1?crid=2UBCTJHGMZPCO&keywords=can+you+see+me&sprefix=can+you+see+me%2Caps%2C95&tag=mumsnetforu03-21&qid=1639950339&sr=8-1

You can get them as audio books

We have always discussed asd and adhd openly with our kids. Why they might feel a certain way because of their asd or adhd. I think one of the big things parents can do is giving kids the ability to understand themselves.

On the phone I just asked my step child with ASD what their parents have done that helped and they said:
Understanding triggers for distress can be illogical to the NT
Recognising that some things can be a huge deal but it can be impossible to put into words what the issue is at the time so parents not asking what the matter is and instead just helping (SD said basically learning to mind read!)
Paying for private psychological support re adjustment to the diagnosis and whether or not to try and mask/pass in society (pros and cons of this)
Not being disappointed by them being different
Not putting pressure on to live a life society would say is successful

Sorry if these aren't much use for the age of hour daughter OP but gives a flavour from an older perspective.

My DD is autistic and has huge meltdowns where she can become aggressive or try to hurt herself "to let the anger out."
These days meltdowns have become less frequent and severe since starting kickboxing. We didn't start because we thought it would help but because she really wanted to do it.
She obviously uses her energy and the breathing and control technique they use have helped her be more calm.
School have given her a lesson pass so she can leave if need be and she is able to access the SEN area at break and lunch as it's much quieter than the school hall/outside.
Safe space is also a good idea. My daughter usually goes under the dinning room table and will often just sit there for half an hour and if kind of helps her to calm down and release the stress of the day.
I also think actually getting a diagnosis helped my DD. I'm not sure why except she suddenly realised her feelings weren't strange or weird

My ds is only 12 but the biggest thing that has helped him so far is taking him out of school.

Good question and probably no right answer. DS20 (autistic) finally gave his 'view' when we were recently giving these for the most recent EHCP/Statement Annual Review.

"You just see me as Autistic and not as Me".

We spend so long, as parents, adapting, fighting for rights, etc that from the dc's perspective it might seem that we only see them as 'autistic'.

Anyways, not only was it good to know, it's taken many, many years for ds to finally express, in words, how he feels.

So I am very, very pleased to know now.

Thanks everyone or the comments these are really very helpful.

Re accepting your child as who they are. I do try to do this but it can be hard. She struggles a lot socially and this causes a lot of stress both dealing with people and because she is lonely and would like to have some more friends. My instinct is to encourage her to interact more with people as that way she can try to make friends, but this again causes more stress and can effect her self esteem like she isn't good enough as she is. I don't think that for one moment - but I know she is lonely and if she could make some more good friends that it would make her happier.

My son has autism and I became a better parent to him when i accepted he was a square peg and stopped trying to get him to fit into a round hole!

@SuperSleepyBaby I'm sure this is really true. I think I am very guilty of doing this.

I am autistic. Recently diagnosed a year ago but had a very supportive mum while growing up. She just accepted me, knew I was different but didn’t necessarily know in what way. The best things she did aside from acceptance, were to remove me from overwhelming situations and understand when I didn’t want to be around other people. She didn’t push me to socialise.
Sometimes the little things mattered the most like not having to say hello or goodbye to people or not having to accept gifts or open them in front of the gift giver. Those things cannot be overestimated.
There are loads and loads more that I can’t think of right now.

On the flip side though one of the worst things that she did was try and force me to tell her what was wrong when I had meltdowns. She would sit with me and not leave until I told her why I was so upset- I could not articulate why I was having a meltdown- it’s a sensory overload issue with no one trigger. I would often just make something up so she would leave me alone. This I had to unpack in therapy. I do know she had my best wishes at heart.
I am open to any questions though about growing up as an autistic girl or what it’s like to be an autistic woman.

It's a tough one. Didn't cut me any slack, so I had to learn. It was hard. My mental health is still damaged from the struggle. But I manage my autism and run a company and am completely self sufficient, I wouldn't be otherwise. I have alot of difficulties from my autism but I recognise them and have strategies to combat, but I've had to learn by myself.

I'd say be loving and understanding but don't tell her that she can't do things, don't lower your expectations of her. Just don't call her a freak when she struggles 🤷‍♀️

This is contentious. We did role play quite a bit with dc about appropriate responses to questions. How to make two sided conversation without dominating with their interests. How not to appear rude -- like previous poster said. Its tiring and hard for them, more like masking but they were desperate to make friends in mainstream. So school can be very full on navigating friendships, most days dc comes in and goes straight to bedroom and zonoes out for at least an hour

One thing that works well with my DD12 when she has a meltdown is just to hug her. I don't ask questions. It really helps.

We have car time, her chance to tell me or say anything she wants or not talk at all of course.

@OnTheHillNotOverIt

Just thought I’d share this. My adult autistic DC shared it today.

This is lovely @OnTheHillNotOverIt thank you

@Bambini12 thank you for your response it is really helpful. I think I am guilty of being like your mum a bit trying to pin DD down as to why she is upset about things like going to school. I've recently started to see I need to take a breath and take a step back and give her some space. It's hard when you just want to help them though. How could your mum have helped you more with/after your meltdowns - apart form leaving you alone?

@Chocolatewheatos it is really encouraging to hear that you have done so well. Did your relationship with your mum suffer from her having such high expectations? And was the cost to your mental health versus what you've achieved worth it? This is something I really struggle trying to strike the balance with my DD.

I’m autistic and my mum is too, but neither of us realised until we were adults. To her I was ‘normal’ and I’m really glad of that - she never pushed me to socialise, or thought it odd that I spent hours wandering around the garden on my own, or in my room working on my latest ‘thing’. So I’d say that just letting her be herself and liking her as she is - not trying to change her or suggesting she might want to be more like her peers - is really important. What I’d have liked more of growing up - and what I’m trying to give my own daughter (also autistic) - is more openness and warmth, the space to make mistakes, the acknowledgement that we’re only human and mess up sometimes and it’s not the end of the world. My mum was a perfectionist, I can tend to have perfectionist tendencies and I can see my daughter also being a bit the same - but I’m determined not to expect too much of her as a parent or to be too strict (my mum’s strictness stopped me being able to confide in her, for fear of her reaction, which is a shame). I’m probably too soft on her, but so far she’s happy and is doing really well so it’s working at the moment. Kindness goes a really long way - for everyone, but I was always so grateful when my mum could see I was struggling somewhere and quietly got us out of there without any fuss (like if you’re at a noisy party and you can see your daughter’s gone quiet and pale - she’ll really appreciate it if instead of jollying her along, you say ‘you know what, shall we get out of here and go home and eat chocolate in front of the TV’ - like it’s something you want to do, not like she’s an inconvenience making you leave somewhere you’re enjoying.)