Being positive about autism

[Sunny4124]

Hi All,

Happy Saturday :-)

My little girl is on the pathway at the moment and will likely receive an ASD diagnosis. She’s 3.4 and non-verbal so far, with lots of sensory stuff going on too.

I’m finding that a lot of what I’m reading is really negative online, and google is my worst enemy! Does anyone else find that? Like, you do some research to try and help you and your family, and actually end up feeling worse? I’m a really positive person, and I NEED to be positive for my family and myself, and especially my little girl, but sometimes it gets me down.

So .... I’m after any positive quotes, books, thoughts, YouTube channels, articles, ideas etc about autism. Have you read anything or heard anything that made you feel happy or cheered you up!?

Not to make light of it you understand, but I figure that me being more positive will have a much more positive impact on my beautiful daughter :-) And maybe even help other Mumsnetters if they need a bit of a lift :-) Thanks in advance x

Nurturing Neurodiversity and Fathering Autism on YouTube are both very positive channels. They show it as it is but the outlook is post.

Post=positive
Autocorrect...

Thanks open!
I’ve come across Nurturing Neurodiversity before after a recommendation on here and thought she was brilliant. Will check the other one out, thank you xxx

The Welcome to Holland poem always helps me.

Plus I remind myself we will never have to pay to fast track security in the airport again

I think the best thing is that my son sees and experiences things I don’t even think about: he can spot a lady bird at a thousand paces, and enjoys nothing more than watching the sun twinkle on the water.

Hi Ely

Ah I’ve just read the Welcome To Holland thing - so true! Holland is lovely! Although I do wonder whether parenting isn’t what anyone expects anyway, so maybe, in a way, we are all in Holland :-)

”I think the best thing is that my son sees and experiences things I don’t even think about: he can spot a lady bird at a thousand paces, and enjoys nothing more than watching the sun twinkle on the water”
^^ I love this so unbelievably much! My daughter is the same! She sort of practices mindfulness constantly without meaning to, sort of rejoicing in the little things and enjoying every second :-)

Thank you :-) xxx

My son was non verbal at 5. Went to special school. Started talking. Hasn't stopped since
He then went to special needs college, did a MENCAP traineeship and now, at 22, has a job in ASDA, where he had support initially and now works like anyone else ! They have been fab with him!
He has a couple of friends (tho we have to take him to meet up) he can catch one bus independently, goes to the cinema with his friend (who has CP) and has a semi independent life.
He won't ever marry, or leave home but he has far surpassed predictions and in the limits of his autism has a pretty happy, loving and loved life!

His obsessions (musicals..we go to EVERYTHING) and supermarkets give him a satisfaction that I will never understand but love to see.

I sometimes envy his lack of understanding of the small irritations of life.. he simply doesn't notice..as long as his world is predictable, he is content and there is a lot to be said for that!

Vincentville is another great very positive YouTube channel.

I've just started reading "Autism & Asperger Syndrome in Children" by Luke Beardon and it is fantastically positive so far - really looking forward to the rest of it.

"How to Raise a Happy Autistic Child" by Jessie Hewitson also VG.

The "Autistic Not Weird" website also has some great articles.

I love how intense DD's interests are, how focused on them she is and how much pleasure she can get from learning a new fact or just watching a bug. I also love how interesting Neurodiversity is and how much we need diversity as a species. I love how much I've learned about myself from observing DD and learning more about autism and human development and neurology more generally.

Twitter can also be great (though depressing at times) - if you start with the #ActuallyAutistic hashtag you'll find some amazing autistic self-advocates to follow, and go from there. There are quite a few people there who are still non-verbal or were as children. E.g. Kate Riot (nv as a child), Amy Sequenzia (still nv), Ann Memmott (nv until 10), Tania Melnyczuk (ekverstania - have a look at her pinned thread - lots of input from non-verbal autists). Really good insights into the nature of communication including non-verbal communication.

There is a group called 'Positive About Autism'
They deliver training and have a website.
I get monthly e-mails, linking to lots of articles and research.

@stillmedusa your account of your son made me cry.my son is soon to be 5 and non verbal and severally autistic ,I'm finding things very hard right now as he isn't developing at all,wish I could put him back in my tummy and start all over again.bless your son, he sounds wonderful xxx

My two favourite books are 'the reason I jump' and 'fall down seven times get up eight' both written by Naoki Higashida. Such amazing insight into being non verbal and autistic, the first one was written when he was 15.

The things I love about ds is that he is completely present in everything he does.
He has an incredible visual memory and a brilliant sense of humour.
He loves building things and currently spends most of the day using magnetic blocks to build symbols that we would recognise. Yesterday He had the creativity to make a croissant shape out of three triangles!
He is so determined and from having been non-verbal at 2.5 he now at nearly 6 speaks in basic sentences.
I love how differently he see the world from me. It means I'm constantly having to find way to adapt and see things in a different way.

Ah StillMedusa, your son sounds wonderful! Love that he gets the bus and goes to the cinema with his friend :-) He sounds so happy, and you’ve obviously done a brilliant job at getting him to have some independence :-)

Thank you for sharing your lovely story and all the best to you and your son xxx

Thanks LightTripper for the YouTube, Twitter and book recommendations, I’ll check them all out! :-)

I love how intense DD's interests are, how focused on them she is and how much pleasure she can get from learning a new fact or just watching a bug
I love this! I can see this in my daughter too :-)

I also feel I’m learning much more about myself! And you’ve inspired me to read about neurology and neurodiversity, thank you :-) xxx

Thanks BackforGood - that group sounds brilliant, I’ll sign up to the emails :-) xxx

Hi WhatAMum01

Sending you massive hugs! I read your thread from the other day, it must be so hard - Please don’t give up, you are doing great and he will progress! Lots of love to you and your son :-) xxx

Hi Liv

I’ll give those books a go :-)

I love all of this....
The things I love about ds is that he is completely present in everything he does. He has an incredible visual memory and a brilliant sense of humour. He loves building things and currently spends most of the day using magnetic blocks to build symbols that we would recognise
My DD is also completely present in everything - just a natural state of mindfulness, which I could never get to if I tried! She also has a lovely sense of humour, despite not talking/ understanding yet :-)

And:
I love how differently he see the world from me. It means I'm constantly having to find way to adapt and see things in a different way.
TOTALLY! I think this could easily be seen as a bad thing by some, but actually it’s great to embrace difference and that he’s giving you a different perspective on life, that’s wonderful. Love it so much, thank you :-) xxx

I know everyone's experience is different (and some kids have very challenging symptoms) so I don't claim to speak for everyone. But I genuinely wouldn't change my son. He has a beautiful soul and makes me look at the world in a totally different way. All I want to do is try and make the world a more accepting and supportive place for him as he grows into an adult...

3 years ago, as we started diagnosis process, I honestly thought we were destined for an angst-ridden, joyless life with a child of very limited capabilities. WAs totally wrong on all counts. Fast-forward 3 years and we are a very happy family - albeit one that spends a lot of time pointlessly riding on escalators and who knows a disturbing amount of trivia about the London underground

Ah WingingIt74

I love your post so much! You are obviously a super positive and amazing mother :-)

.... (he) makes me look at the world in a totally different way
Also 100% with you on this! Same here :-)

I think when you’re going through the pathway/ diagnosis (as we are now) it’s very easy to sort of look to the future and think the worst... So it’s amazing to hear you say that you were totally wrong about how life would be :-)

And lol about the escalators, bless him :-)

Thank you so much, and all the best to you and your little boy :-) xxx

Great example of success...you are injecting positive energy into.our life

Where is this group.please?

Facebook?

Thank u fot ur post, i am going through same with my DD its so easy to miss the positives when confronted with this. Im so focused on what she cant do and how different she is to her peers i forget whats amazing about her! I love how my DD takes so much notice when looking at something, a book or a food packet or a bottle or a toy. She just takes it all in. She is also the only child i know who looks at the spine of a book!