Son diagnosed with autism

I'm a mum of two ND kids who are now young adults. My oldest DS was 3 when he was first diagnosed so I have been where you are. Our DD was born four years later and was the most awful sleeper, to the extent that a midwife in the hospital said "I now understand why some mums are driven to murder their kids" 😱after she'd screamed the hospital nursery awake all night. I myself became seriously disabled during the birth of our DS and wheelchair bound after DD, so it was very challenging to have children with extra needs.

You definitely need to sit down with your husband and work out a plan to allow you time off and how to balance the needs of everyone in the family. Accept that he won't do it exactly the same as you will but that's also a good thing. Your kids will get different things from both of you and it's important for your DS to be able to bond with both adults in his life and your other child will need some time where they have got a parent who gives them their full attention.

Read up on autism and the different ways to communicate with your child. Meet other parents in a similar situation and find out what works for them. There's not a one way or one answer as all people with autism will be different but there are things that are common and it can make the world of difference. For example we found that an egg timer was useful for stopping fighting over toys because they could predict when they would be expected to exchange/ give it back. We also would tell them a few minutes in advance that we were going to leave or finish something so they would be prepared for the event to happen, rather than it suddenly be sprung on them.

Both of ours would want to know what was going to happen before we went to somewhere strange or different. For example going to the dentist. We would talk about what it would look like, how they would be expected to behave, what the dentist might do and why we were going there. We would role play lying back on my lap, putting sunglasses on and looking at their teeth with a torch, to familiarise them with the idea of being in the dentist chair.

As you discover what upsets your child, you will find ways to reduce them or help them cope. You will have conversations with you DS and I am very certain that he's understanding much more than it appears he is from his responses to you. At 3 our DS didn't say anything at all, no noises when playing and I was worried he was deaf. When he started talking I thought he didn't understand much at all but I was completely wrong. You will have conversations about diverse things and in great detail for things that interest them, be prepared that it won't always be at the most opportune time for you but it's better to be available for them than not. It can be virtually impossible for them to wait to tell you something or lose the idea of what it was.

For sleeping our DD was very difficult most of her primary school years and still has a very strong "night owl" tendency even now. We found having a weighted blanket to be really effective at helping her to sleep longer and more deeply, though it's got to be the right weight in relation to their body weight and I'm not sure how old they have to be before they can use one.
We also used aromatherapy oils and a bed time routine to get her into the mindset of getting to sleep because she really struggled with getting overtired and then highly emotional and unable to switch off.

In primary school years both of our DCs would be fidgeting and finding it difficult to sit still, so they used tangle toys which they could use without disruption to the rest of the class. Having something to manipulate and get sensory feedback from helped to focus their mind.

Regarding bullying, unfortunately it's going to happen. Kids can be very cruel and pick on anything different but a good supportive school will deal with it. Some of it our kids didn't notice, so it wasn't a problem to them. They will find friends in school and play together. Ours both had smaller groups of close friends who they still are friends with. They also have a high proportion of friends who a neuro diverse and can communicate brilliantly with and are very supportive of each other.

Both of them are happy young adults who've done very well academically and been/at university. There are things that will always be more challenging for them but they have found ways to cope with some of them too. So there's plenty of good times ahead for you and your family.

Op have you tried magnesium for your ds , my friend uses Calmify and swears that it has led to deep sleeps for her ds who is asd and 2.8yrs old

My 6 year old twins are AuDHD. I am, too.
I've never felt any grief nor devastation for how either are, probably because of me have the same diagnoses (although all of us have very different support needs from one another).
I do feel for anyone who feels any sadness etc regarding the diagnosis. For my part, I couldn't have anticipated just how challenging Twin 2 would become and just how fucking relentless it is with zero input from the father and no family left.
BUT...despite how advocating on their behalf nigh on destroyed my mental and physical at one point, seeing how far they have come is truly amazing.
I hate anyone referring to ADHD and Autism as something akin to a superpower. It's not all negative, but it's not fricking stardust and rainbows, either.

My son was diagnosed with ASD age 4 and I can remember feeling exactly the way you do. I was scared stiff thinking about his future and how he would manage and be.
The diagnosis enabled me to get him additional help and 15 hours a week with a teaching assistant. Year on year he progressed till he decided that he no longer needed the support of the assistant and myself and his school agreed. He is now in year 9 of secondary school and is doing really well. My advice to me looking back would have been to stop worrying about the future, I know it’s easier said than done but just try and focus on now and get all the help for your son that is available. All the best x

Hi op, just wondering how you're getting on? How is your little son doing? Going through similar thoughts as you did in your posts....

PS you said you got a diagnosis for ADHD for your child at 3 years old?? I was told i couldn't have my son assessed for ADHD until hes 6... have I got this completely wrong?!

Oh I'm so sorry things are so tough for you right now. My son is, I'm pretty sure, about to get diagnosed with autism (assessment in a few weeks). I don't mind the label (I'm pretty sure I'm ASD too) but his struggles are breaking my heart. I love him SO much. If it's any help I'm a teacher and I have taught loads of autistic children at my (selective, academic private) school and they've been brilliant. I have hope that, despite the struggles, my son will have a happy and fulfilling life.

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

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 ❤️

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.

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.

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

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.

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!

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?

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.

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

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?

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

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.

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 🌞

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.

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.