Tell me about your ASD DC

[UsefulZombie]

DS has been identified as having 'emerging needs' and it's made me realise how little first hand experience I have of ASD. Please tell me about your lovely little people with ASD - what are they like? What are they great at? What are they interested in? How does their ASD impact day to day? What have you learnt from parenting a ND child?

Hi there.
My son is now 6 but was diagnosed age 3. We always knew tbh.
He amazes me every day! A little bundle of energy! A downside too obviously as he literally never stops.
He's now in a special unit in a mainstream school and loves it. They've helped him so much.
Everyday is difficult yes. I don't drive so going out is a nightmare, he has no fear or road safety. Can't really do a lot of 'normal' things.
BUT his personality and passion for life is so great that I couldn't imagine him any other way.

My DS is a very happy boy with severe ASD. He loves to type and spends a lot of time typing out lists, song lyrics. He is so fast at typing and can do 80wpm, it's a grwat way of communicating for him as he finds verbal communication difficult. He loves everything about the moon and knows all the facts you could possibly ever want to know. He loves being outdoors and we try and be as active as possible. He is an adrenaline junkie and loves theme parks and rides, and also loves walks and we have climbed snowdon and Ben Nevis and be still talks about them.

Yesterday he told me I was going to jail for swearing in the car

And yes, his ASD impacts us on a daily basis, but he is 14 now so 12 years since diagnosis and I have adapted to focus on the positives because otherwise the negatives can really wear you down.

Can I point you to the group Autism inclusivity on facebook. It's run by autistic adults to help with questions for parents of autistic children.
In my house we are adult diagnosed
autistic parents to an autistic daughter.

The biggest barriers for autistic children seem to be neurotypical expectations. The best parent you can be is listening to your son telling you who he is as opposed to how 'society' tells you to parent him. From your original post, you already sound very good at this.
My dd likes art, music and maths. Happiest outdoors. Not big on people.
Regulates through screens and is a mine of random information thanks to what she calls her 3rd and 4th parents 'Google and YouTube'. She's an almost teen.

DD is on the spectrum without learning difficulties. She's 9, she's super bright, she struggles socially - doesn't really "get" how other children work, although I think she's more well-liked than she realises. She desperately wants a "best friend", but has such a fixed idea in her head of what that would look like that she overlooks the friends she has.

She's not at all sporty. She loves reading and video games and animals. She's interested in history and myths and legends. Loves dragons and unicorns. Wants to be either a war lord or a video games designer when she grows up. 😆

She finds expressing emotions hard - feels things very deeply but doesn't know how to process them so just suppresses it. Takes a lot of time and patience to get her to open up when things are bothering her - I've discovered the only way is not to force it in anyway (because she'll just go on the defensive) but just give her plenty of time alone with me or another trusted adult so the opportunity's there for her to open up when she's ready.

She has a lovely smile naturally, but when asked to smile for a photo will put her fingers to her mouth and push the corners of her mouth upwards. She lacks physical dexterity and struggles to stay still - is constantly moving around, usually on her tip-toes, in a non-specific fashion we call bimbling (she's our Bimble-bee!) She has some stimming behaviours and some sensory issues - usually to do with clothes, she's the opposite of a fussy eater though. Loves to try new foods and prides herself on her adventurous eating habits.

She's got a wicked sense of humour and a good understanding of sarcasm. She has a NT little brother, they wind each other up terribly but love each other and look after each other.

I waver between worrying desperately about what the future will hold for - in some ways she's very young for her age, and very naïve and vulnerable - and being sure she's actually going to take over the world, because she's so confident and self-assured.

She's amazing, and she delights, astonishes and baffles me every single day.

My dd is 13. She was diagnosed aged 8.

She's an extremely talented artist. Her life revolves around when she can next get into her art room and just lose herself in her work. She loves animals and geology too.

She goes to alternative provision school now as she didn't cope in mainstream secondary, although she found primary manageable with support. She has two really lovely friends who are also ASD who she shares interests with. She loves being home, wearing pjs (inside out always), swinging, listening to marionette music, playing with her cat and learning languages. She hopes to go to college and uni to study art in the future.

She suffers from anxiety. She's been medicated in the past but is coping better recently. She has been hospitalised for her mental health when she was 11 and forced to try and attend mainstream secondary. We nearly lost her. Feels like they push ASD children too hard to fit into the norm. She doesn't cope with being around too many people. Even if we just have family round she can only manage about 20 minutes then she retreats to her safe place. She doesn't do supermarkets and big shops. Wears ear defenders most places as loud sudden noises make her run (she's a lot faster than me!). Socially mute. Takes a while for her to be able to talk to a new person. She's so vulnerable too. If a stranger said to her to get in their car she'd totally just do as she's told. That terrifies me. She has Tourette's. She hates her Tourette's a lot, gets upset about it and then that makes it worse.

Biggest thing that's helped my dd over the years is educating ourselves about ASD, sensory issues, neurodiversity etc and in turn helping dd learn about it. So she always knew why she's different.

She's the light of our lives x

I have an autistic 9, nearly 10, year old son. He is an absolute dream. He loves to play games where he is absolutely certain of his part in them, so games with very definite rules, he is very affectionate with us all and adores cuddles. He really struggles with friendships and he doesn’t really have friends but that is something we are working on very slowly with him. He like numbers and maths and he likes spelling and he enjoys playing on screens and watching you tube videos. Getting him to eat well has been a real struggle but he is improving all the time. Getting him to exercise adequately is a struggle but we are working on it. He has had some sensory issues that we have had to work with him on improving his tolerance of over the years.

Social interactions come from scripted ideas and need to be explicitly taught but his repertoire is getting bigger and bigger by the day.

He literally laughs all day from morning until night time and it is infectious so he has always been really well thought of by people around him because he is so joyful. Teachers and support staff who have worked with him over the years all wax lyrical about him so while it is sad that he has no peer friendships it is nice that he has such good relationships with the adults around him.

These are fantastic. I feel like I'm getting a really vibrant insight into the huge variety of lovely lived experience that can exist under 'ASD' and I'm really grateful

My son is nearly 3 he is autistic. He is filled with joy, smiles and laughs constsntly... But he mainly lives in his own world. Likes what he likes and enjoys a simple life. He is non verbal and has very low comprehension. It's hard in ways and easy in ways... Like all parenting I guess but our challenges are different.

It's a massive spectrum ,though and for all adults and children who are doing well some children will never ,live independently ,and will need 24 hour care for the rest of their lives I don't want to put a dampner on the thread ,but it's a spectrum disorder for a reason ,my son is non verbal at a special school ,he's still amazing and lovable and makes me laugh everyday but he will never live independently.

Mine is definitely not little anymore. However, he’s doing his masters, has a lovely partner and has had the same bestie since year seven. However, he can’t cross a road safely, is disorganised and cannot leave the house without noise cancelling headphones.

Hello
I have two children with ASD, a boy whose 6 and a girl whose 3. Both of them diagnosed with autism and global developmental delay. They are very very different. It’s true when people say if you know one person with autism you know one person... with autism!
My son is verbal and in mainstream school with a statement. He’s a bundle of energy and never stops but his creativity astounds me. He’s brilliant at building lego and has the most natural curiosity for how things work. Answering a question ‘because it is’ does not work in this house . He does have problems with emotional regulation and he struggles with change. He can lash out if he needs something done immediately or in a certain way and it’s not possible at that moment and I find that quite difficult. I’m waiting on occupational therapy and I’m really hoping it helps him, even just a tiny amount.
My daughter is another kettle of fish all together. She’s non verbal, autism classed as severe, has pica and can’t seem to walk at the pace or speed of other children her age. It’s very much looking like she’s going to need a special needs unit. She’s also the most wonderful little girl with so much personality. She likes to take all the clothes of her dolls but leave them in there hats. She loves dancing and will dance to anything! Including dh’s weird mid century folk music. She loves play doh, particularly trying to sneak a bite of it while she thinks your not looking... The hardest thing I find with her is other people’s reactions. At a glance she’s quite clearly disabled and other people do stare or throw pitying glances. There’s no need! She’s a happy very much loved child and if somebody offered me a magic wand to make her neuro typical I’d decline. She wouldn’t be the same amazing child.

@UsefulZombie

These are fantastic. I feel like I'm getting a really vibrant insight into the huge variety of lovely lived experience that can exist under 'ASD' and I'm really grateful

Well I was going to post earlier but deleted it. I don't think bigging autism up is remotely helpful to anyone. It gives a false impression when people post about how their child is fitting in and doing well as if they are not absolutely challenged to do that. Also it's important to remember that as children grow and develop they may become more able in some areas but also less able in others. The first time I had real anxiety I was in my 40s - as a child I presented as happy but I was thoroughly miserable. I struggled my way through, for the benefit of others, never let it show, never asked for help and eventually had a breakdown a few years ago because being that 'success' was too hard. Just too hard. I think of it turns out your child is autistic you just need to work with them for them and lose any expectation of where you think they should be at that stage of life. Autism is a lifelong disability and it's important to keep your expectations realistic.

I appreciate your response and I will reflect on it, thank you. In my case I'm not aware of actually knowing anyone with lived experience of ASD, so wanted to hear from others in order to establish the realistic expectations you mention. Hence why I started the thread. It wasn't intended to 'big up' anything but instead benefit from the first hand view and expertise of others.

No I didn't mean that the way it has probably sounded / I'm so bad at explaining things.

@Eltonsglasses

No I didn't mean that the way it has probably sounded / I'm so bad at explaining things.

Apologies if I misread your message. As you can imagine, things have been a bit emotionally fraught here and perhaps I didn't read your message properly

Mines lovely . Hes 10 and doing ok. Fortunately hes in quite a small class with some lovely kids and has a very well qualified 1-1.

Great things:
I say ds you need a shower. Why? Do I smell? Yes. Ok. And off he goes...
Ive learned to play roblox with him.
Back in the younger years I learned how steam trains worked and quite a lot about trains generally.
He draws a lot.
He likes his routine so is quite easy to get off to school in the morning.
He doesnt pull stupid shit like other kids do - hes very careful.
Currently quite easy to motivate. So one chore gets a star, 6 stars give robucks.

Bad stuff

• having to guess constantly whats going on in his head
• having to take the initiative all the time
• wondering how long the other kids will carry on being nice to him
• eats a very limited diet
• tough to change clothing with the weather
• he will only participate in stuff that interests him. So no family days out that arent based on his interests.

DS1 was diagnosed a couple of years ago as he turned 9, and it was when he had a struggling phase at 7 that I suspected there might be neurodiversity.

He has a strong "Aspergers" type profile. He'll discuss the deeper inner workings of black holes, military strategy of WW2 battles but then in combination with his dyslexia and dyspraxia write letters in his name backwards and can't cut food. Life is frustrating and very polarised for him. Fortunately he has a good measure of his strengths and challenges and a healthy self-esteem.

He's funny, affectionate and caring. He's not embarrased to hug or kiss me in public. He's well-liked, has a best friend. Does well at solo sports. Needs a lot of quiet time and rest to recover from masking and mixing with the world.

He's a delight. He's frustrating, usually because he's frustrated. Remembering that he's not being personal and it's just a struggling with the world day helps a lot! The sensory side of things is the greatest issue from the ASD itself, although the ASD exacerbates the dyspraxia and makes it harder to try new strategies.

Mind you DS2 has his moments too and he definitely isn't autistic

I have two. One is very academically able and is now a doctor, but has struggled massively with mental health, eating disorders.
One went to special school ..non verbal til he was 5, and with some learning disability. He will always need support and won't be able to live independently (he's 24) Never had a girl/boyfriend and is unlikely to, but does have a lovely friend from special school.. they would like to live in supported living together one day. BUT he is kind, gentle, loving, obsessive and repetitive..and has a little job in our local supermarket where he is very much loved, as he adores his job and as he does exactly as he's told, he is a perfect worker
He has many obsessions and we have learned to relax and just go with the flow.