Positive autism stories please

[ForeverBubblegum]

I'm feeling pretty down after a meeting about DS, and could really do with some light at the end of the tunnel. If any of you lovely SEN mums can share stories of progress or positive outcomes for your autistic children it would be much appreciated.

For context DS just turned 4, currently awaiting a diagnosis (many covid delays), but everyone involved with him agrees the diagnosis is just a formality really. Logically I know the meeting was quite positive, we planned what evidence we still need to collect to put in a EHCP application by February so it's processed and funding in place for him started reception. The school is on bored and confident they can get it accepted, so all good really.

The bit I'm struggling with is when everyone was asked to share their concerns, followed by 20 minutes of various people listening every struggle or crappy thing that's happened, and it was a lot. Nothing I didn't already know, but hearing it all together just makes want to cry for my baby. He's so desperate to make friends and play with the other kids but keeps getting it wrong and already the other preschoolers are pulling away from him.

Hi OP, the time around diagnosis is really raw and difficult. It will get better in time, it honestly will.

My positives would be to tell you that my autistic DS lights up the room with his warmth and character; that he cares deeply about people and is loyal to his (admittedly few) friends; that when you see your DS make a genuine friend (and this may come later than for typical kids) that your heart will SING in a way that typical parents will never experience; that my DS calls me to stand and look at the sunset because he is transfixed by its beauty; and that although life is not at all easy, there are honestly no words to describe how much I love my boy and how much joy and colour he brings to my world.

Let yourself feel whatever you're feeling now. It's bloody massive, autism. Give yourself time

Jo has nailed it there. Diagnosis is all misery because it's all cast as deficits. There will be other points where you will have to think like this and it does make you sad - applying for DLA for example. But it's a heavily biased, system-defined pretty old fashioned way of thinking about autism.

And now, my child is 9 and I really do catch myself feeling sorry for the parents who haven't got one of these human 2.0 children in their families. I worry about the world not being kind enough for her, but she's an utter gift - a magical, tricky, complicated, hilarious, insightful delight.

And my main advice is you are only as happy as your unhappiest child, so do everything in your power to make him happy. If he needs to move school - do it. If he needs to stay in all weekend - do that. Don't do what other people think you should do. Do what you and him think best.

My DS was also assessed when he was 4 and diagnosed with autism by age 5. He is early 20's now and just sat his final exam to become a fully qualified electrician.
His boss wants to keep him on after his apprenticeship ends despite having to substantially increase his salary because he is so good at his job.
He has such a lovely personality, would do anything for anyone and his quirks just make him who he is.
He chooses not to tell people about his autism because that's not how he sees himself and the very close group of friends he's had since school all accept him as he is. Before lockdown his social life was amazing!
He had alot of sensory issues when he was younger, which manifested into physical illness if exposed to noise or a party type atmosphere too long. Now he loves (before covid) going to nightclubs and out partying with his friends. And he has just finished saving his deposit to buy his first flat.

It took a long time for me to realise I didnt have to worry about him. And now I'm about to do it all again with his toddler DSis whose ASD assessment has already started. But I feel more relaxed about it this time because i know she will be ok.

I have two with ASD, diagnosed at 4 and 6, within 2 months of each other. We knew nothing about autism, and were completely devastated.

Not helped by the professionals involved sadly, the only language they spoke was negative. I suppose it must come with the territory. We went down the rabbit hole of multiple worthy therapies, all of which looked good on paper. These took up most evenings after the kids had come back from an already stressful school day, and cost huge amounts of money.

After a few months of this, we looked at our relationship with the kids and it was getting worse. We could only see them as a project, not as children any more. We'd trained as ABA therapists to cut costs too, so we'd fully bought in to the whole thing (Disclaimer: I'm sure ABA is very helpful for lots of kids, it just wasn't particularly for us).

We decided to just treat the kids as children, who needed to play and be loved and listened to like other children. We had (well watched) play dates instead of therapies, and got the kids to talk about feelings (theirs, and others'). We did homework in the evenings (their school work had been going down hill) and when it was finished, it was finished.

They're teenagers now. They're not social butterflies exactly, but they have (a few good) friends, and can relate to people, and talk to them when they need to. They love our pets, and relating to them has been very good for teaching kindness and empathy. My eldest was 'given' 11 GCSEs by his school last year, with very good grades. He's doing 4 science/maths A levels, and is very chilled about life and likely to go to Uni - although he'll probably live at home for it. He was considering applying to Cambridge, but he now thinks it may be too far from home.

My youngest has always had one very close best friend, although the actual friend changes. I'm hoping those skills mean he'll have a very close girlfriend eventually, although he's still young for that now. He'll do OK at GCSEs too I think. Although he has problems sitting exams because he gets too stressed, we and the school will work on coping mechanisms.

They love me, and their Dad, and each other. We still hug each other often, and watch films together on Friday nights sitting on the sofa, and though they've never been good at saying they love me, they show me in lots of different ways and even when they're at their bolshy, teenager worst, they know there are lines they don't cross because they don't want to upset me.

They're affectionate, and happy doing their thing. They show every sign that they'll have a good life. It's not as bleak as they made out at the start by any means, although over the years we've had to put in a lot of hard work with them, and have had to stand our ground a lot when people have tried to write them off. Be prepared to be very firm with schools and professionals, and you'll be amazed by what your son can actually achieve with your help and support!

I really needed this thread- thank you for all your stories. Your dc all sound like amazing people.

Ds2 diagnosed at 7, lots of red flags before that, but what Multiplying said re giving him happy childhood rather than "therapies".
Lots of stuff in between some bad most vvgood! Ds2 did v well in A levels tho v dyslexic and now at uni studying a humanity subject. I'm so proud of him. He has friends too and is kind and funny.

Also what LegoRoses said.
If you need to homeschool do it
If you need to spend an hour leaving house carefully preparing and "chunking" the steps, do it.
If you need to slim down extra curricular stuff in favour of playing with same set of trains day after day for months on end, do it.
Don't care what stage other people's children are at, yours will develop at the right pace FOR THEM and eventually surprise you.

In the same boat as you op and so worried about September approaching. It’s so lovely to hear stories of children settling in schools, making friends and being happy

Hi, just wanted to say a big thank you to everyone who's commented, it's so reassuring to hear that your have found their own path to happiness.

We're still very up and down. Some days I genuinely forget how different our lives are, adapting to his needs is just our norm, and within that context everything feels fine. Then the next day he's lying on the floor screeming at pick up time because his reading book has a small rip, and the reality of his struggles hits me all over again.

Looking back, framing the small things (and large things,) that caused screaming and disrupted family life, made me and him miserable , in CONTEXT of how a person with autism thinks and might "feel", would have helped me help him.
So for example pickups are always going to be a sensory and transition flashpoint. How can you mitigate it? Maybe ask teacher to let him out first. What happens when he comes out, is there a predictable "reward" or reinforcer, snack, action (ie getting in cosy safe pushchair or car seat with fav toy) or release, running in park for ten mins, that is going to reward the transition. Tips are probably a theory of mind thing...rips mean second-best, or that something is wrong with book for HIM. How can you reinforce at home that battered, broken things don't mean he is getting a worse book than other children, or that broken things are still "value" objects. Eh stories about discarded toys that are second-best but then restored to 'life", mended or not discarded at all (ie Bagpuss)

Or simple things like making sure he isn't bursting for the loo when he comes out of school and not telling you.

You cannot deal with these things in the moment, with autism you have to plan things and model, prepare child we do this and then, if it is raining we do X if car breaks it is like that story in y book.

If only I had known all this stuff when D's was refusing to put his shoes on! (Executive function deficits, poor motor skills

Sensory issues with the shoes on, not wanting a change of pace (transitions). I should have broken things down into tiny steps, first we sit on step, then I get your shoes then you wiggle your toes (fun reinforcer) then I put your shoes on ( no arguing, reinforce action whilst he is still too clumsy unsure to manage (practice dressing soft toys later in calm setting) then next step is leave house to do X yz all explained in advance in v positive but simple way.

There are different "presentations" in individuals with autism. DS was very friendly, very cuddly talked non stop, extremely impatient, liked sitting on people and classmates, obsessed with trains and at other times off with fairies. No dexterity, extremely fussy with food and textures, extreme sense of being wronged if he didn't win games etc. Couldn't write at all, couldn't do colouring.
He did half days in Reception cos school could see it was v exhausting to do more than than that. But he loved it cos he wasnt overwhelmed by the full day, and then worked up to full day (3pm)by year 1

DS ended up with 2 As and a B at A,level. Even if he had no A levels, I would look back and think let him develop at his own pace, which I think we did by not rushing him into situations or skills he couldn't handle.

DS also attended a strict Montessori type 3 hour nursery which suited him v well, I think the combo of structure and concentrating helped him interact with others much better than a free play situation. He did free play at home with sibling (twin) playdates were well nigh impossible at that age, he was too demanding. But 1 to 1 with adults and one child supervised and encouraged his social skills without overwhelm. He also adored soft play but not team games or skilled games.

So walk through forest good, football at that age bad. Now football fanatic.

My autistic DD is now 27 so my advice is just deal with how things are now. Don't worry too much about the future because just like NT kids your son will grow and develop and change. There were times when my DD was a child when I despaired and thought we'd never get through this. But now she's grown up, is settled with a lovely partner, and works full time in a professional job. She still has difficulties but she doesn't have meltdowns because a random cat didn't let her stroke it.

DS used to lie down on the pew in church, full length, whilst everyone else was sitting or standing or kneeling, and say very loudly he was 'tired". He used to run out of concerts when the clapping started screaming "I can't stand this". Aged 10/12. Absolutely excrutiating and made him unpopular cos kids usually don't put up with others breaking social norms.
All completely changed now he is polite sociable considerate ,aware, neutral.
But it is a long haul, along with the joy. I think the deficits are there they do cause pain but there are so many ways that you can find happiness with your child and you will never ever want him to be anything but 'himself" a changing developing self that it is.

Autistic adult woman here. I am now happily married with 3 DC. Before lockdown, I worked in a library. I still do have the occasional meltdown but my life as a whole is simple and content if that helps to know.

My son was dxed when he was 2.5 years old. Even up to the day of his diagnosis I was hoping that he didn't have it and that it was just something I was doing wrong. He went to a specialist nursery and then special school for a while where he got lots of intervention.
Once we altered the way we parented and got to understand him more, it got easier. Once he started speaking at aged 6, a little easier. He's now in mainstream with additional support and we are currently looking at colleges for him. He's a very popular child in the sense that everyone knows him at school and he has a small amount of friends (who all have some form of learning disability) who all look out for each other. He's never been bullied luckily and he is always so positive. School have even said he's a good ambassador for those with autism.
He does have his moments, high anxiety over certain things, lack of sleep, unable to go anywhere unaccompanied, but he is so much more than just his diagnosis.
It does get easier Op, take time to digest his diagnosis, there is no fixed time in which to get used to it. 💐

Nettleskeins Thank you for all your advice. We have a relatively stables pick up routine, which works most of the time. I park round the corner from nursery, and we call in a small playground on the way to the car, have 20 pushes on the swing and a go on the roundabout then walk up to the car. He has a treat in the car to eat on the way home, then when we get in he lies on the sofa with his blanket watching telly until tea (afternoon class, so he's shattered by the time we get in).

I think part of the problem is we've always coped by controlling the environment / activities to suit him, but now he's getting older I can't always do that, and we don't have strategies in place for things that are unexpected or outside of my control (like which book he gets etc).

Talking about bagpuss or other broken but still good things is a good idea for the book problem, as I imagine tatty books are going to be a recurring problem with cash strapped schools. (Unfortunately swapping books isn't an option right now, they quarantine the book bags with the new book inside)

My ds was diagnosed at 7 and I went through the mill with all his melt downs and quirks. I honestly found the younger days so hard,but I listened to what he needed and adjusted things,where with my elder two I didnt have to.
Now at 13 I have a wonderfully empathetic, funny and loving son. He still has quirks( likes to lie in the bath for an hour until his skin wrinkles,then picks it and moans,likes to guess everyone's age on the TV and then we Google to see how far out he was,gets upset at school as he says people stare at him but then I ask why and he says he stares at them first,terrified of balloons and crackers though loves a pop concert...I could go on!) But just to say everything has calmed down and he is a joy and I'm so lucky to have him.

Oh bless you - it's a stressful exhausting time! I feel for you.

My ASD son made a massive amount of progress after the age of 4. He started school barely verbal and only just toilet-trained. I really believed he wouldn't last more than a couple of years in a mainstream school before we'd have to get him into an SEN school. He's almost 7 now. He is still not much of a talker but has enough functional speech to get by. But he reads confidently, is doing well at maths and the kids in his class have really taken him to their hearts. Moreover, he's happy

Everytime I under-estimate my son's capabilities, he proves me wrong. It might take him a little longer to pick things up, but he does get there.

Try to enjoy being with your child. They are still your kid and still special and unique.

Following ❤️

Late to this bit what a lovely thread. I really hope it helps OP.

Re the torn book you could just let him read a home book instead if he rejects the school one. As long as he's reading, that is all that really matters. My son read hardly any of his reading scheme books - it wasn't a battle worth fighting. We live in a house full of books, he didn't need to read specific ones for the sake of it.

We tend to think, in terms of friendships and social skills, that he is a couple of years behind his peers. When he's 4 that is incredibly hard. By the time he's 10 you will have woven it into the fabric of his life and he'll have toys and friends that work for him, rather than you endlessly trying to catch him up with his peers. There are hard times and stresses but I'm 100% sure we are much better parents than we would have been without his autism.

not sure what you mean by "positive outcome". Autism is not an illness and cannot be cured and there is no outcome as such. Don't mean that snappy but I am puzzled what it's supposed to mean

fwiw, DD was pretty much non verbal at 4 and cried and and had meltdowns most of the day. It was hell. but is a teen now and can hold simple conversations is caring, kind and funny (but will need lifelong 24/7 support). Does that count?