Son diagnosed with autism

[Soverysadandworried]

I’ve name changed for this as I’m certain I will end up with lots of negative comments and could be outing but I need to be honest and just pour my heart and inner thoughts and worries out somewhere.
my son is 3 and has just been diagnosed with autism and ADHD. I am absolutely distraught. I love him and his beautiful smile and laugh so much and feel so protective over him, but I find parenting him
exhausting. He’s always been a terrible sleeper, up crazily early every single day (4am!), very impulsive and lots of meltdowns, just feels like every single fucking thing is hard and I spend so much time repeating myself/chasing him, and feel
totally overwhelmed at all the other shit I have to do that never gets done while I try to help him and engage him and it all feels so pointless.
I find the looks he gets hard, not for me but because I hate the idea he will have a lifetime of them. I find it heartbreaking seeing how different he is from other kids and how even at their young age it’s like they sense he’s different and don’t include him.
he goes to preschool. He seems to like it but from what I gather he plays alone most of the time which kills me.
people seem to try and put a positive spin on how autism is a superpower/different not less etc etc etc but all I see is a hard road ahead. I just feel so sad and despairing and worried. Hoping one day I don’t feel this way but now, right now, I am devastated.

My heart goes out to you, my son who is 8 got diagnosed with ASD last year and ADHD a couple of months ago.

It's so tough to see them struggle and if I could take away his difficulties, I would in a heartbeat. You will find ways to cope, even if it is by trial and error.

However, give yourself time to process the diagnosis yourself, sometimes I think it feels like grief, griefing for the life and child you imagined.

My son is amazing and I love him to the moon and back, but have realised I will spend years fighting for him whether with school, the council etc... It's a war and not a battle, so you need to look after yourself.

I hear you, it’s tough when they’re so little.

DS1 was diagnosed (ASD/ADHD) at 7 after lots of school struggles, he’s now nearly 11 and absolutely amazing: top of his class, popular and happy. He is a bit different and will face struggles in future, but we try to communicate openly and discuss/reflect on things. The game changer was medication (school-time only) but I also think he’s a naturally sunny, fun-loving kid. I realise that it seems a long way off, but they grow and mature and surprise you.

It is hard. My son was diagnosed autistic at 2. The looks are relentless but I just have to have a thick skin.

I know lots of children and adults with additional needs who have happy lives.

My son won't won't have a typical path, but I hope he will be happy.

But yep with you on how exhausting it is

I think my son has adhd too but in my area they only diagnose that after 6/7

It'd such a hard road, but it does get more manageable as you learn to navigate the path ahead. What helped us the most in the early days was finding some autism or SEND groups (depending what's available). We're lucky that near us there's a play centre for disabled kids, and it's so refreshing, the kids are all use to been 'the different one', so are usually really accepting of differences. And when your dealing with a meltdown no one judges, as everyone has been there.

You've done brilliantly to get him a diagnosis so early. I know it's tinged with sadness, as it feels so much more 'real' once it's diagnosed. But he's still the same boy he was pre-diagnoses, just now you have the best chance of getting him the support he needs. I know it's still early, but if you haven't already ask his nursery to start the EHCP process, it takes a long time and the sooner you start, the sooner his needs at nursery/school can be met.

I'm sorry OP, huge tight hug. How you feel about this is normal. It's completely unfair and your life and your sons life will be more challenging and you can't rewind time. It's a bitter pill to swallow. My nephew is autistic and has ADHD, he is 8 and can say a handful of words but most of what he says is repetition. If he knows Christmas is coming for example he might say "Christmas is coming" all day and no matter how many times anyone says "Yes darling, Christmas is coming" he repeats the same thing and nothing but all day. Often hundreds of times. It can be extremely exhausting. Do you have a supportive family and husband? You need to lean on them as much as you can. Ask for them to look after your little boy so you can go out and see girlfriends or go to a spa or to the park for a walk or just to sit on a bench and breath. You can't predict the future and there is so much growth and change to be had and some of the growth spurts can be truly monumental, breathtaking and really take you by surprise. I think people don't know what to say so they end up either not saying anything or bringing your attention to the positives when really sometimes you just need to vent at how fucking hard, lonely and unfair it is. 💕 huge hug 💕

It can turn out really well - autistic DS 21, is 'safe as houses', meaning there's so many other very bad things out there to fuck our kids up, at least I know my very capable ds is not involved in any of that shit.

Yes, sometimes I wish he would go out (socialize) more, but then I count my lucky stars he doesn't.

Looking back, the 'educational' side was completely horrendous, but DS just got a Level3 Btec so he overcame that nonsense in the end.

Is he going to be bullied? Is he always going to be alone? Am I ever going to be able to have a back and forth conversation with him or is it just going to be him asking me what letter everything starts with his entire childhood? Will he ever sleep? Will I always have to watch him like a hawk?

i feel like your reaction is totally normal and expected, please don’t beat yourself up for how you feel about it.
three year olds are really hard work at the best of times and it’s extra hard when there are other challenges at play too. Lack of sleep makes everything harder too.
my dd has ASD and we’ve had ups and downs in terms of how challenging I’ve found it dealing with her. Baby to four was very hard, age five to ten was much much easier. Eleven it got much harder again. (Hormones etc I guess!) Anyway I think you’re in a particularly difficult phase of time with him but it won’t necessarily always be this hard. You’ve probably barely had a chance to recover from lack of sleep in the baby years because he still isn’t sleeping great. That can change too though - it may seem a long way off but my DD started sleeping much better around age 4.
please know that there is hope ahead for you all, he will be different from others but doesn’t mean he won’t be happy in his own way.
In future even if he doesn’t have lots of friends, he may well find one or two who share his special interests and find his own way. Don’t despair.
it feels very hard and new right now but nothing you do is pointless. All the care and love you show him every day through taking care of him is making a huge difference and it’s everything to him even if he doesn’t show it.
hopefully you have a primary school near you with a good SEN dept as that makes a big difference.

I've been there and it's so hard. My 3 who were lively non sleepers aged 3 have calmed down a lot now they are older. Some things are hard, some things are very hard but there is also a lot of happiness too. Ds1 is loving college and has joined a band made up of all ND students. Last week I was able to take my 9 year old to an activity without another adult helping for the first time.

Sovery not anyone, not even you, yet, knows what is the best way to find the points that your ds engages with - but you will.

It does involve a bit of sacrifice of every expectation you had before, but that usually goes without saying for most parents.

Go with the flow whilst still being 'in charge' - it will be ok 🌞

Big hugs to you, OP. It's a shock to get the diagnosis isn't it, but probably you already knew in your heart of hearts that your little boy was very likely autistic. It's sad because yes, both of your lives may be harder because of it - but he's still your lovely boy and now that you have the official diagnosis you'll be able to seek help for him.

I agree with the pp who suggested that you begin the process of getting an EHCP for your son as soon as possible. These things can take many months or even a year or more sometimes. The sooner he has the EHCP, the better. That will, hopefully, secure him a place in a SEND nursery and subsequently either a specialist school or a special unit in a mainstream school.

I worked at an autistic school with a nursery attached and the progress nonverbal children made in communication was impressive. So like someone else said start looking now. Goodluck

I hear you and I want you to know that your feelings are valid. Remember to take care of yourself. Seek support from professionals, friends, and family to share the burden. Your son may face challenges, but he will also have strengths and abilities that will make him unique and wonderful in his own way. Have a cry then find strength within yourself to persevere. Worry is like a rocking chair: it gives you something to do but never gets you anywhere. It's a journey, so take it one day at a time. As for other people, excuse my language by fuck 'em, what do they know?

my son was 10 when he got his diagnosis obviously we knew but the actual diagnosis hits you like a sledgehammer it just takes the wind out of you. All the things you imagined for your child are swapped with worry about how they will get on, school life etc I think calling it a superpower is nonsense watching my son struggle and not knowing what I can do to help is flipping awful, worrying about him going to high school for the first time etc being different maybe bullied etc fighting for support and help it’s been relentless.

its normal to feel how you do, it’s exhausting and you do just want the best for them, you’re not alone op

IME it's (usually) only hard if you try to get your child to "fit in" to neurotypical life. If you try to take their lead and do what makes them happy and avoid what makes them not then life will be a lot simpler.

Obviously there are some children for whom this does not follow, particularly if they are non verbal and/or can't express their needs/wants. But I do think finding out at 3 means that you can be well prepared for school starting.

I hate when people say "it's a superpower" - for the vast majority of people living with autism in their family it's not. But the good thing is that there are lots and lots of support groups out there - Facebook will likely have something in your area. You feel less alone when you can talk to and meet up with people in the same boat.

He is verbal, but social communication issues/speech delay meaning everything is very factual, no back and forth conversation. Like I will say “what makes you happy?” and he doesn’t know. He wouldn’t immediately say “the playground! soft play! Dancing with my sister!” or any of the things I know he likes. It’s really hard. Been told he will go to mainstream as he doesn’t have a learning disability.
it just feels like constant demands and no personal space, no breaks, no sleep, no down time, like he’s been awake since 4am and is still awake now FFS, I have no family to help me, his dad lives with us but he’s either at work or basically not that hands on, we have another child who I constantly feel guilty is left out while I deal with my son, I feel like I’m going mad and just want to run away and have some fucking peace for a bit. It’s been so hard the last couple of years with his emerging behaviours but you cling onto the idea maybe it’s just really hard toddler behaviour, maybe it will get better, now it just feels like a life sentence for both of us

I'm sorry things are so hard and you sound close to burnout. Now you have a diagnosis it will help you to find things that might help and crucially find others in similar situation for solidarity.

One thing that really strikes me is your DH being hands off. When your have a child with high needs it's essential that both parents pull their weight tbh. Even then it's hard enough.

What's your financial situation like?

Ds is now 13, got diagnosed with autism at 4 (I think - my memory is dreadful). At 4 ds played alone, had daily meltdowns and delayed speech. I’m not going to pretend that his life is perfect or easy but at 13 he has a couple of friends at school, attends mainstream, is predicted top grades in science, history and computing, builds robots and computers and knows random facts about seemingly everything. He does still have meltdowns, but only at times of really high anxiety (usually times of change), he has anxiety which we are on the waiting list for treatment for and he can be quite easily persuaded into things as he is very literal/takes things at face value. He also says exactly what he’s thinking, which is both an asset and a flaw. As an autistic adult myself, married to a (almost certainly autistic man) I function in society although it’s been a lot harder to than a neurotypical. Three is still so young and kids do mature (even neurodiverse ones). Although ds has his challenges, I have no doubt in my mind that he will be an amazing historian or robotics engineer one day!

Re the sleep - you should be able to get melatonin prescribed by a paediatrician although I'm not sure what age they can have it from. I believe there's slow release one which might help him stay asleep.
Also have you tried white noise? Both my kids need it to get to sleep and stay asleep.

Also, apply for DLA if you've not already. Can be really helpful for lots of extra expenses you may need to pay for.

Also I echo the melatonin for sleep. It knocks ds out (he was a horrendous sleeper). Ds finds listening to white noise very soothing and it helps him sleep. He can’t sleep without sound on.

My DC was recently diagnosed, all be it a little older but I’ve known for years be had ASD.

It’s a relief, I’m not a bad parent and he’s not a bad kid. He’s just wired different and I know with support he will be great.

Melatonin was a game changer, his meltdowns are fewer now he sleeps and we are less stressed.

Im very lucky to know several ASD adults who have been very successful in life so I know with our support he will be fine.

I can’t grieve a NT child because he was never a NT child. I haven’t lost anything with the diagnosis, just gained understanding.

Oh OP - my heart goes out to you. My 3 year old was diagnosed this year too and if I’m honest, there are little things that he does that I don’t admit to anyone but secretly they break my heart. Like when he makes up nonsense words instead of answering questions because he doesn’t know how to. Or when I see him answering other people’s questions with learnt phrases which are relevant enough that people don’t realise but I can tell are just answers he’s heard someone else use rather than what he actually thinks. Or when he randomly repeats whole sentences from shows or stories…

Like you, it’s not because I don’t love him or the way he is but because it just reminds me that the world is going to be more difficult for him. And I never planned for this. And you feel like you have to self censor and pretend these things don’t upset you because either people will think you’re a horrible person or try and tell you that really it’s a great thing…

I haven’t really got any answers or advice, just wanted to let you know that there are other people who feel like you. I feel better about it now than I did 6 months ago and I don’t really know why that is. Maybe because the diagnosis made me implement things at home that have made life easier like a visual timetable and sand timers because he used to have major melt downs because of an activity stopping or routine stuff. Or maybe because my little boy is happy and now has friends at nursery who like that he randomly spins in circles, has taught himself the Spanish alphabet and remembers cool things about Spider-Man that they don’t know…

I definitely think your DH needs to look after the kids while you have a rest though. Why does he have the choice to be not so hands on? Do you have the luxury of opting out?

Sending strength and love ❤️

I work with kids and plenty with ASD / ADHD. My DD has ADHD although not everyone seems to believe us (they don't live with her!)
They have challenges and need understanding but they also can achieve & have friends etc & have really good lives.
Defo join support groups and forums and learn lots about it