To be sad and scared for the future - ASD 2.5yo

[everydaytay]

My DS is on the ASD pathway. I am devastated for him and the future, to the point where I wish I didn't have him.
NHS waiting lists are long and seems there is so little support anyway, chronic underfunded schools and little provision.

He doesn't know how to interact with other children - he might never get invited to a friends house, or be able to cope with this anyway? Or have friends?
He only eats 3 foods - so he'll never happily eat out, join a picnic or try foods on holiday?
He stims a lot - so will he be an outsider for life?
He only has a few words - will he ever be able to have an actual conversation? Or engage in life socially?
Will I be his carer for life, with him living at home forever? He'll be unable to perform in school, and to get and hold down a job, partner, etc?

So many thoughts like this. I am not cut out to be his parent and wish I wasnt.

My autistic son is now 15- and every day is hard . But this is the child you have so you will have to get used to it and change your dreams to accommodate his needs .
life isn’t over - it is just going to be different to what you expected .
sounds like you’re in shock …. But don’t treat him like you don’t want him … he’s still your son.

DS1 didnt utter a single word until he was 2.5 - not even mama or dada. He was still in nappies at 7. He is very high functioning though and extremely intelligent (reading age of 14 when he started school)so he has managed to get on ok at school etc although has never been very social.

He is 17 now and in 6th form. He no longer has any obvious tics and is very articulate. does really well academically but he does no extra curricular activities whatsoever and never sees any friends outside of school.

I hope when he goes to uni he finds his tribe of people like him but I do worry about him being alone in life.

There is a lot more awareness now about Neurodivierity and a lot more accommodations made.

My son has ASD and is now five, although was diagnosed around the same age as yours. I totally understand the concerns and how you’re feeling right now — I remember being where you are. I’m not sure how helpful it is, but a lot can change, both in terms of your child and your mindset in a relatively short space of time and I promise you will get to grips with this and be exactly the right person to advocate for and support your child.

I read this poem shortly after my son’s diagnosis and found it really made sense of things for me so sharing here in case you find it helpful:

Welcome to Holland - By Emily Perl Kingsley

When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport.
Only when you land, the stewardess says, “WELCOME TO HOLLAND.”
You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY.”
But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay.
“BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!” you say. ‘I DON’T WANT TO STAY!”
But stay, you do.
You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.
The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned.
It’s slower paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts.
But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.”
The pain of that will never go away.
You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss.
But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.

My nephew, 20, has ASD. He too had no friends at school although is extremely bright (maths), and lasted only six weeks away at uni.
Now lives back at home and travels in.
He does solitary activities, running, cycling etc. Holds down a part time job albeit with very much older adults who tend to leave him alone.
He seems happy enough but there's no doubt he's a worry, particularly the mental health side of things as he gets older.

Autism.is a huge spectrum ,nobody knows at 2.5 how a child will be in the future ,they will folloew their own trajectory, my son is 14 and still non verbal ,he goes to a specia school l and will need 1: 1 assistance for the rest of his life ,but there are many people who are independent ,married, working etc
But at your child's age it's impossible to tell.

Thank you - and @elarcoiris for sharing the lovely poem, it resonates.

It seems it is true that he may never have a social life? and may never live independently? I don't want him to be alone in life and forever, and I also don't want to be a lifetime carer (particularly as he is very challenging and DH and I have no family support/quite isolated from help). I don't know how to accept that this will be his, and our fate, of living un-sociably and disconnected.

The point is you don't know how things will be in the future I'm.14 years down the line now ,and my son is severely autistic and whilst I'm.not for one minute suggesting your son will be the same ,he maybe very independent
Most people accept it at some point ,when my son was first diagnosed I had a very bad time accepting it ,and felt very alone ,I eventually met a supportive group of friends who have children with similar disabilities, and that's really helped me.

My DS has ASD. He's 35 this year.
He had speech therapy around the age of 3 but there's nothing wrong with his speech now.
He only used to eat beige food. Right up until he was about 20. But since then his tastes have really developed and he's less fussy than me now!
He did struggle socially, not going to lie. but he found a great group of friends in his late teens and they're still friends now.
He holds down a responsible full time job, he got a degree, although a bit later than the norm. He even worked abroad for 2 years.

Your son is 2. You're worrying prematurely. There was far less understanding of neurodiversity when my DS was a child. Things have come on a lot since then.

My DS is one of the kindest, nicest people I know. He's caring and generous. He has a wicked sense of humour, often has me in stitches. Yes I wish childhood had been a bit smoother for him but I wouldn't want to change the person he is.

Hi OP, here's a virtual handhold, it's very hard at age 2, so much uncertainty. My son was referred for ASD assessment at age 2.5, he got his diagnosis age 5. He is now 6 and yes there are hard days but lovely days too - things are nowhere near as bad as I thought they would be when he was 2.

My son eats very few foods, we still go on picnics/meals out/holidays. Sometimes he tries stuff, sometimes we just take his preferred foods with us. We just muddle through.

He desn't have real friends or playdates right now but currently he is happy with that, so I try not to project my anxiety about his social situation onto him. He is at mainstream school iwth a 1:1.

He didn't speak much at 2.5 but now doesn;t really stop - we are working on back and forth conversation as he tends to just talk at people and not listen.

The Holland poem is a bit marmite, some people hate it but personally I found it very helpful. There is also a fantastic blog called A & Me that you should check out.

You can't predict exactly how things will turn out at this stage, but things will definitely change rather than stay the same.

No, he may not ever have a social life, but that doesn't mean he'll be missing out - if he doesn't want those kinds of interactions, and prefers his own company then he will still be happy either way.

Stop looking at it from the perspective of what you want, and what "normal people want", and start looking at it from the perspective of what he wants and what makes him happy.

It's normal to mourn for the life you thought your child would have, but don't let it stand in the way of facilitating the kind of life that suits the person he is.

My DS is profoundly autistic, and he has no understanding of being different and the things he "should" want. He is unashamedly and authentically himself. Stimming makes him happy, so I let him crack on - if other people want to ostracise him for it, it says more about them than about him, and the joke is on them as he won't notice they're doing it anyway.

He may never have a conventional best friend, or a life partner, but he has people in his life who he loves and trusts.

And the main thing is the pure joy. The absolute, pure, distilled happiness you will get from him accomplishing tiny tasks that most parents simply take for granted. "Normal parents" will maybe get that euphoric feeling for their child's first steps or words, but with a bigger mountain to climb you get to experience that for so many more occasions. Also, DS takes everything at face value so he has not an ounce of cynicism. Experiencing the world with him as he draws utter delight in a good pizza, or a loud song, or cold paddling pool has changed everything I thought I knew about being happy and living in the moment.

A lot of it is awful - the violence, the meltdowns, the poor sleep, the additional costs, the challenging behaviour - a lot of the time I feel like a shell of myself, but those moments of joy - they are worth it.

He doesn't know how to interact with other children - he might never get invited to a friends house, or be able to cope with this anyway? Or have friends?

Maybe, maybe not. I'm autistic, I had precisely two friends at any one time during primary school, and at secondary school I suddenly had more people to watch and learn social rituals from, and I realised that I had skills that were very valuable in my new environments - as a result, and equally suddenly, I acquired a group of very close friends that I stuck with for the next 15 years.

He only eats 3 foods - so he'll never happily eat out, join a picnic or try foods on holiday?

That's very possible. And it may also be possible that out of nowhere he'll develop a special interest in food. Again, relating it to my experience, I had all sorts of trouble specifying the kinds of foods I enjoyed, and I very much restricted the contexts in which I'd eat around other people. Then, for no real reason, I decided that the best idea was to learn to prepare food to my exact specifications in order to save myself the hassle...which quickly became an exercise in optimising the process and the food, and as it turns out...I'm actually quite a good cook after all that, and I really enjoy learning how the science relates to the practicality of complex dishes.

He stims a lot - so will he be an outsider for life?

You need to understand that the world we live in now is a lot more accommodating of the nature of autistic folk than the one we grew up in (for me, that's the 70s and 80s, when any indication of not-normal meant being consigned to "special school" and forever being ostracised). He will have far more opportunities available to him than he would've done if he were born in any previous generation.

He only has a few words - will he ever be able to have an actual conversation? Or engage in life socially?

Even for children who're completely non-speaking at an early age, a significant number can suddenly and inexplicably start talking in whole conversations any time, often around 7-8. Communication development (actually, most development) in autistic children can be very, very lumpy - no progress for years, then suddenly catching up or even advancing past their peers, then stagnant again for a long time, then...etc.

Will I be his carer for life, with him living at home forever? He'll be unable to perform in school, and to get and hold down a job, partner, etc?

It's far too early to tell. It's a function of all of the above, but most of all...don't pre-judge the rest of his life at the age of 2. He doesn't know what's next, and neither do you. The best thing you can do is take it day-by-day with him, and develop your plan as he does.

Give him a quiet space in the house where he can retreat to recharge, learn to understand his triggers (sensory/social/etc) so you can avoid unintentionally setting him up to fail, give him the agency to communicate his needs to you without negative consequences, and don't try to force him into your way of dealing with the world - he's going to have to come up with his own approaches to all of that.

Do all of this, and you may be surprised at how well he adapts. It's not necessarily all catalysmic. He's still a person and he still needs to be given agency, he's just unlikely to do anything the same way you do. He will experience the world in ways you can't even imagine, and as mentioned above...that involves unbelievable joy and fascination as well as meltdowns and hiding from the world.

My son is 6 and recently diagnosed as ASD and had severe speech delay. He couldn't say his name joining reception.

We reached out to a speech therapy charity and a key thing they said was about keeping making progress. My child might never catch up but he makes progress.

In reception I watched him struggle at parties. For his 6th birthday we had a small
Party with 6 class mates which was suitable for him and he loved it.

My son has restricted eating but we worked up to finding something. He likes mashed potatoes. Nando's does mash. We go to Nando's a lot!

"Stop looking at it from the perspective of what you want, and what "normal people want", and start looking at it from the perspective of what he wants and what makes him happy."

Op I think when you get to this perspective you will find it easier to cope.
My son now a teenager is very severely disabled by autism and learning disability but I believe he can still have a happy life and it is my job as his parent to do all I can to make this happen.

He has also taught me to find joy in simple things, probably something that would not have happened otherwise.

Hi OP. I too felt like you did, although my DS wasn't diagnosed until age 7. As PPs have said at 2 1/2 you have no idea how your child is going to manage later on in life. That said, there were months and years where I felt terrified for my DS future. He's 16 now and only just really starting to become more independent. He's much less independent than his younger brother, but he's getting there in his own time. He managed a hospital appointment on his own last week, and honestly if you'd have seen the 8 year old flipping tables and banging his head at his earlier appointments you never would have believed it's the same child. I don't feel frightened about his future anymore. He might always need more support that my other DC, but for the first time in his life I'm finally beginning to see how he could live independently. Hang in there OP 💐

This is a helpful read and handhold. I do just feel sad for the future and (selfishly, I know) - my lifetime ahead of caring responsibilities, having to make accomodations, extra support explaining things that are just simple and 'normal' for me and it all just being harder. I didn't and don't want this.

Has anyone had experience of how to adjust to this? Planning for the future? It sounds morbid but with no family who are close/interested I am already thinking what would happen when he's an adult if I wasn't around or wanted a break.

My antenatal group plan parties and picnics and it is so sad knowing my DS wont participate/eat anything/hate it if we go and so I worry for the now, how to overcome his extreme food restrictions and challenges in the world, as well as the future.

My antenatal group plan parties and picnics and it is so sad knowing my DS wont participate/eat anything/hate it if we go and so I worry for the now, how to overcome his extreme food restrictions and challenges in the world, as well as the future

My antenatal group had drifted apart well before my son's additional needs became apparent, but if yours can't make accommodations/accept differences in your son then they are not real friends. I find the whole 'find your tribe' thing a little bit cringeworthy, but there are folk out there who 'get it', they just might take a little bit of hunting down.

I think you can't plan the future too much as its just too soon to tell what it will look like. And thats the same for any child age 2 tbh. Focus on what you can control. Having to make extra accommodations just becomes second nature.

The key thing to understand here is that autism is not a static condition - your son's requirements and sensitivities at the age of 10 (for example) will not necessarily be the same as they are at 2.5.

Be very wary of looking at him now and saying, "Right, that's it, he's never going to have friends, eat properly, or learn anything". You don't know any of that, and all you're doing is a) creating masses of extra anxiety for yourself, and b) actually limiting the things he'll be able to do yourself.

The irony is that thinking that way actually makes you as inflexible as you imagine he will be. I do realise that saying, "Relax, it could turn out fine!" is about as useful in this context as saying, "Just cheer up!" to someone with depression, but...while I don't know anything about your son's support needs beyond what you've posted here (understandably, not a lot), he does sound very much like me at that age.

For context, I'm autistic, and I'm fully independent (well, I'm kinda dependent on my OH for dealing with the outside world comfortably, but I can handle it on my own if I need to), I have an excellent job putting me easily in the top 5% of earners, and I've got a very full and happy life because I've managed to construct my own world around me such that I can do those things.

However, I had to do all of that by painful trial and error because my mother - who knew in a way that I'm autistic because she is too, as have people been in our family for at least seven generations - convinced herself that I'd grown out of it when I went to secondary school and discovered how to mimic natural socialisation. None of them ever used the word "autism" for it, though, just euphemisms that let them hide in plain sight.

My point is that you really don't know what the future holds for him; he could end up with hugely imposing support needs, or he might be able to pass for neurotypical for a few decades while he builds his own personal environment with the help of people he trusts, or anything in between. You need to learn to adapt as much as he's going to have to. If he's lucky, and he's capable of adapting like many (actually, most) of us have, then your involvement will reduce over time. It's not a life sentence for you.

you will adjust. it's the grieving stage you are going through. Things get better. My 16 year old will never be independent and not do many things which I took for granted. But they are a happy soul who enjoy life. It's harder for me as I don't feel I have a life (nor will I ever have one) but you roll the dice every time you have a child and you have to live with the consequences. I have accepted that now.

My DD is recently diagnosed. I had a lightbulb moment about 2 years ago and finally realised she wasn't just a "difficult child" and now with hindsight (and having learnt so much in those 2 years) the signs were always there and so many moments in her life make sense now.

She also doesn't eat a great variety of food. So if we go out we make sure we go somewhere which has something she likes. If we go to a picnic/BBQ with friends we just take something she will eat. Exactly the same accomodation we make for our other DD who is veggie.

We know that too much time socialising is too much for her ( which I now understand is the effort of masking) so we are always the first to leave the picnics etc. It's always been that way.

She's always been a "snacker", doesn't eat much at mealtimes but grazes through the day. So I always have a snack in my bag.

My point is as PP said, these things just become second nature. Through time you will learn the things which help your DS and will just do them automatically.

If life has taught me anything it's that nothing is certain. Yes, your DS likely will struggle with some things as he grows up but things will change so much, he's still so young. He may not speak much now but that doesn't mean he will always be that way. Autism does not necessarily mean a lifetime of insurmountable challenges. It may be a long and difficult road right now but there is no way to tell at such a young age how someone will be as they grow, autism or not.