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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask what helped your autistic child?

69 replies

Annon12345 · 20/04/2023 12:56

Posting here for traffic, sorry!
What helped your autistic child thrive? Special school, play therapy, lego therapy, speech therapy, music lessons? The list is potential ideas is endless though nothing ive done so far has helped. Ds aged 5 recent diagnosis of asd. speech issues, sensory seeker who atm is making my life incredibly difficult with some annoying shouting and noise. I can't have a conversation with him, he has some speech for his needs but not social skills and unable to hold a conversation. Currently in Mainstream school with 1 to 1 and academically ok but unaware of world around his and appears lost and in his own world. I've read books, tried some activities but nothing seems to interest him. I'm frustrated, he's frustrated, life is hard work, exhausting. We need to apply for the ehcp but looking at ideas for anything that may be actually useful and where you noticed a difference?

Thanks

OP posts:
Geneticsbunny · 20/04/2023 13:21

In all honesty, I am not sure that any of the things we have done have made any difference to how much "progress " my son has made. The best thing I did was prioritising his happiness above everything else, realising that there is no point in setting unachievable standards for myself as a parent and just enjoying him for who he is at the time.

Geneticsbunny · 20/04/2023 13:22

Also prioritise looking after yourself first. You need to be able to advocate for him and you can't do that if you have a breakdown. (Voice of experience)

Irritateandunreasonable · 20/04/2023 13:26

So, I’m here just to say that what has made a difference to my child is everything I’ve had to fight tooth and nail for.

YOU are the only one that can make a difference - fight so, so hard for anything and EVERYTHING you think might help. Children with ASD vary hugely so it may be a bit of trial and error as what helps one may not help others.

This will not be freely given to you by any means, you will have to advocate every step of the way. Sometimes you will feel crazy, sometimes people will make you feel like they don’t need something or you’re being dramatic - do it anyway and know that most parents of ND children feel like this.

CopperRosie · 20/04/2023 13:28

Music therapy has been the standout for my ASD child. We approach it as being an alternative form of communication, sensory calming/energising as required, encouraging movement, and exploring feelings. It has been eye-opening to see how effective it has been in DCs case.

unlimiteddilutingjuice · 20/04/2023 13:33

In my sons case, the thing that helps most is very careful pacing of demands and social activity.
The difference between what he can achieve when he's rested and in his comfort zone (as opposed to overwhelmed from social interaction) is very striking.

Itstoday · 20/04/2023 13:39

Accepting her for who she is and really understanding what she needs day to day so she is as calm as she can be and therefore family life for us all is better.

and moving her out of mainstream and in to special school.

Cuckoosheep · 20/04/2023 13:39

Biggest things that helped my sob was sorting out his ehcp properly. This lead to independent speech therapy and occupational therapy as the nhs couldn't provide the level of support specified in the plan.

We also introduced an aac device at a young age however you're never tok old. He was non verbal but still continued to use it as he developed speech. It isn't there to replace speech if a person can use verbal language but it takes the pressure off especially if it's something like lamp words for life as the buttons never move places so muscle memory takes over.

We had an amazing mainstream primary that went above and beyond for him, we're still in touch with his old 1:1.

Colourful semantics helped with sentence structure and understanding of the different parts of sentences.

We use lots of pictures/ visuals to support everything.

We use basic makaton signs so he has an extra visual prompt of what is being said. So verbal language, signs and visuals/ symbols all together.

Any written work was broken down into coloured text to match colourful semantics.

Lego therapy but the type by Brick by Brick. Many teachers, ya's therapists etc "do" Lego therapy but if not done correctly and by someone properly trained it's not going to help that much or as much as when it's done properly.

Work together with school so that whatever gets implemented at home gets implemented at school and vice versa. Consistency really helps.

We follow his interests and he does and has always gone out to places, in the community, theme parks, anywhere and everywhere. So he feels part of his community and is used to these places and so we don't stop taking him even when it's difficult or other people find it awkward.

Look after yourself too.

Cuckoosheep · 20/04/2023 13:41

Also he is now in a special school but we looked at too many to count to find the right one, then fought for it.

Butterflyflytoday · 20/04/2023 13:43

Changing school made a huge difference for DS.
DS has ASD and other ND, finally attending a school where he didn’t feel an outsider helped massively. He started aged 13 and now (18 months after starting) is a happy person.

SpringCherryPie · 20/04/2023 13:47

Having patience, a lot of patience, high expectations but low stress environment.

Speech can be helped a lot - look at the Hanen books ‘more than words’ and pair single words with your actions. Get on your child’s level and pace, respond more to your child with non verbal or verbal ways a lot more than you ‘try to put words’ there.

School - personally I think mainstream plus 1-1 doesn’t always help with ‘classic’ autism - a lot goes over their heads, it’s a busy environment and nothing is really tailored to them. Sometimes it can just be off putting. Does your child understand the teacher? Is any of it really helping them or just ‘holding’ them in a big class with little opportunity for them to learn. Look into specialised education.

Lego therapy etc imho is ok if your child is able to interact with others - otherwise it’s just them building lego by themselves.

Music is really great, movement is really great. Trampoline, singing simple songs.

IPads are also really great with so many amazing apps that kids without little communication can learn from and get stuck into.

Spendonsend · 20/04/2023 13:50

OT mostly
Low demand environment at home
Special school of the right type
Equine therapy

whatalovelydayontheintergoodlord · 20/04/2023 13:53

The main thing that has made a difference to both my autistic children is the right school with the right support. That is key imo.

The only other thing that has helped is making sure all their needs are assessed fully. Both mine also have an ADHD diagnosis and medication has helped massively with school. I had to push for both to be assessed for ADHD as once they're diagnosed ASD professionals tend to put everything down to that. One of mine also has a Dyspraxia diagnosis, and OT and physio used to help - before they became a teen and refused to engage with it anymore 🙄

Geneticsbunny · 20/04/2023 14:13

Irritateandunreasonable · 20/04/2023 13:26

So, I’m here just to say that what has made a difference to my child is everything I’ve had to fight tooth and nail for.

YOU are the only one that can make a difference - fight so, so hard for anything and EVERYTHING you think might help. Children with ASD vary hugely so it may be a bit of trial and error as what helps one may not help others.

This will not be freely given to you by any means, you will have to advocate every step of the way. Sometimes you will feel crazy, sometimes people will make you feel like they don’t need something or you’re being dramatic - do it anyway and know that most parents of ND children feel like this.

I strongly disagree. This may have been good for you and your family but I would be dead if I had gone down the fighting mentality because you can never "win". It is not the right way of doing things for all people.

SpringCherryPie · 20/04/2023 15:12

@Geneticsbunny and @Irritateandunreasonable I guess we can probably all agree that it is very hard work either way! Maybe this is partly the EHCP which is a fight for many. I do think there isn’t enough support out there, it shouldn’t be down to having to be articulate enough to get the right support. And I also find there is a lot of ‘politics’ around support, you mention the word behaviour or intervention and there is an influential group in neurodiversity who say it should be acceptance of difference only, and therefore a big void around what can really help or not.

Annon12345 · 20/04/2023 15:23

Thank you all. Its exhausting isn't it! School have now decided to put ehcp application on hold until next year so they have more evidence to document. I'm just overwhelmed really! Lots of really useful advice to go through though so thank you

OP posts:
FloatingBean · 20/04/2023 15:32

Apply for an EHCNA yourself, ISPEA have a model letter you can use.

I agree with @Irritateandunreasonable. Sadly DC whose parents know the law and can advocate for them and enforce their rights get better support. It shouldn’t be that way but it is and unfortunately the system isn’t going to change any time soon.

hiredandsqueak · 20/04/2023 15:41

Independent specialist schools with SALT and OT on site and other therapies available. They benefitted from tiny classes, bespoke curriculum and fantastic support. Once well supported in school home life was a million times easier.

BestZebbie · 20/04/2023 15:47

Home Education - allows us to follow interests, pace demands, and (unexpectedly, but obviously in hindsight) meet lots of other autistic children and adults so he is the same as his friends rather than always being "the autistic one" who doesn't quite fit in/doesn't really follow.

Geneticsbunny · 20/04/2023 16:02

SpringCherryPie · 20/04/2023 15:12

@Geneticsbunny and @Irritateandunreasonable I guess we can probably all agree that it is very hard work either way! Maybe this is partly the EHCP which is a fight for many. I do think there isn’t enough support out there, it shouldn’t be down to having to be articulate enough to get the right support. And I also find there is a lot of ‘politics’ around support, you mention the word behaviour or intervention and there is an influential group in neurodiversity who say it should be acceptance of difference only, and therefore a big void around what can really help or not.

Yes absolutely. It is hard for all of us. I also think the journey is very different if your child is diagnosed very early than if they are diagnosed once in juniors/ secondary school. So parents with children with early diagnosis may be more similar to the OP.

Jellycats4life · 20/04/2023 16:04

Over time you learn what makes them tick.

Look up sensory diets.

Low demand at home is a great suggestion - we try to do this.

But above all, radical acceptance.

gogohmm · 20/04/2023 16:10

Every child is an individual, so you need to customise for your child.

That said my dd had aba therapy 25 hours a week from age 3, standard offering in the USA. On moving back she nothing at all! Do i think it helped? Obviously I can't know, but I think it helped her regulate her emotions, learn to cooperate in the classroom, sit still etc so when she entered British school at 5 (we returned to the U.K) she went into mainstream. She also had 2 hours a week salt from 3-5.

gogohmm · 20/04/2023 16:11

We also enrolled her in violin lessons, her request, she learned quickly and plays 6 instruments now,

BabbleBee · 20/04/2023 16:13

Reducing demand was a big step forward for us as a family, DD responded well to it. Not PDA diagnosed but I followed some of the advice and it worked well.

Routine. Keeping everything routine made her feel safe.

Speech therapy.

Equine Assisted Learning.

Having said those things, I know others who wouldn’t have done well with anything we’ve used for DD. It’s very, very individualised.

Cuckoosheep · 20/04/2023 16:16

I agree with @FloatingBean. A year is s very long time to wait. Apply yourself. The threshold for an assessment is very low and how will anyone know how to best meet his needs if they haven't been assessed. From what you've mentioned I think you would be reasonable to ask for a SALT, OT and EP assessments as a minimum. Social care as well if required.

Ipsea and sossen are invaluable. Check both websites, they also both have helplines.

elliejjtiny · 20/04/2023 16:16

I think the thing that helped my autistic children most was to let them do all the sensory things they needed where possible.

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