Things I wish I knew when my son received his autism diagnosis

10 tips for parents who are in the early days

It’s been 13 years since Jude received his autism diagnosis.

Thirteen years since we walked out of that room with a few leaflets, a diagnosis of autism and global developmental delay, and a head that was spinning. So many unanswered questions, so many fears of the future, and a deep, deep sadness for how life was turning out.

I didn’t doubt the diagnosis. I didn’t really know what it meant, but I already knew that Jude was different.

And I didn’t feel anything but love for him. He was my little boy, and he was perfect. Whatever the future held, I knew we’d work it out, and I’d be by his side every step of the way. It didn’t make it any less scary though.

When I try to cast my mind back to that time I don’t recognise the person I was. The parent I was.

In the years that have followed, I’ve learnt a lot. A lot about autism, a lot about parenting, a lot about life. I’ve changed and grown a lot as a person too. How could I not?

I know a lot of our followers are in those early stages. Considering or waiting for a diagnosis. Or in the first year or two since receiving one. I know because I get lots of messages asking for advice. Any tips I might have. Parents who are feeling lost and overwhelmed by everything that’s going on, and searching for anything that might help.

I know how you feel. I was that parent. Some days, as different life stages come along, I still am. Just with more experience as a starting point.

I’ve thought about some of the things I wish someone had told me back then. What would have helped me as I was trying to piece together what the future might look like, and figure out what I needed to do to help Jude and Tommy. So here goes…

1. It’s ok to feel how you feel right now

Let’s start with how you’re feeling. There are all kinds of feelings that an autism diagnosis can conjure up for parents. Some of us will have been fighting for this for a long time and will feel a sense of relief that someone finally believes them. Happy that now they might be able to get the support their child needs.

Others will be angry, heartbroken, confused, scared, worried, and overwhelmed. Maybe there’s a sense of guilt too. Guilt that you must have done something wrong (you haven’t) or guilt for feeling the way you do.

We might feel all of these feelings at different points on different days. And that’s ok. You feel how you feel. It’s your natural reaction to the information you have, with the information that you know right now.

Everybody is different, we all handle and react to things in different ways. That's what makes us unique, just like our children.

It can take some parents weeks, months, or years to come to terms with a diagnosis. But sometimes we have to go through all of these emotions to reach a better place.

Jude and Tommy were both diagnosed around 18 months old, and I knew the diagnosis was coming way before it was officially given. Was I sad, angry, confused, scared, relieved, overwhelmed? Of course I was. All of the above. 

But time is your friend. Give yourself time to go through and reflect on these feelings whatever they are. As you learn more, as you grow, things will begin to look different and your feelings will change and develop. I promise you they will.

2. Learn about autism, but take your time

If you’re anything like me you’ve probably spent a lot of time on Google. Searching, scrolling, looking for a magic answer.

For the first few years after Jude’s diagnosis, I read books, took courses, watched documentaries, and started to look at social media for anything I could learn about autism.

But, for me at least, very little of it stuck. I was always a good learner at school but for some reason no matter how much I consumed, it was as if all of the information was falling out of my head within a few hours.

I was overwhelmed. I was stressed, over tired, and hardly any of this essential, important information I was trying to take in would stay there.

I was trying to do too much. I was in too much of a rush. I’m not saying don’t spend time learning about autism and what it means for your child, I just think there’s some benefit in slowing down. Especially if you’re feeling a lot of the big feelings I spoke about above.

We don’t study a degree in 3 months, and neither do we learn about autism in that time either. You’re going to be learning for the rest of your life, and your child will be your greatest teacher. Just take it one step at a time.

3. Pick your battles

We’re all different. We all have rules in our own homes and a way of living that differs from the next person. But we’re also probably going to have to adapt that way of living a little in order to make life a happier one for our kids.

Tommy and Jude do things that if they weren’t autistic and had certain needs and levels of processing/understanding, that I wouldn’t have allowed, or wanted them to be doing.

Whether it’s climbing on furniture, bouncing on beds, eating certain foods, or the amount of screen time they have, sometimes we have to choose our battles.

When I’m with Tommy and we drive out of the road that we live on, I always turn left, even though we have to turn right to get out of town. I don’t know exactly why it’s so important to Tommy, I just know that he gets incredibly stressed if I forget and signal right. So we always go left.

It’s a tiny adjustment, one that wouldn’t make sense to most, but one that makes for a happier life in our house, so we do it.

There are much bigger battles we’re going to have with our kids, and being selective about them has certainly helped us.

4. Don’t be afraid to ask for help

Now I’m not saying it’s going to be easy to get, but there are many parents I know and speak to who have never asked for help that they’re entitled to (or are completely unaware of what might be available).

Let’s start with professional help. There are all kinds of different professional input and activities that our kids might benefit from. Occupational therapy, speech therapy, and getting a care plan in place to access the right support at school. Then there are social care, mental health services, charities, and local support groups, all of which may be able to help and play a part in our family’s lives in the years to come.

Then there are state benefits that you might be entitled to. In the UK there are Carer’s Allowance, DLA, and tax credits to name a few.

For many parents I speak to they’ve heard how difficult it can be to get support so they don’t bother trying. Or they feel that there are others who deserve it more than they do.

Then there’s the help friends and family may be able to offer. When my parents were well enough, they were a vital part of me and the boys’ lives in the support they gave us. There were many times in the early years when they had Tommy or Jude overnight, or even for an hour or two, giving me and their mum some much-needed respite.

If friends and family aren’t an option, maybe the solution is outside help. For years now we’ve used carers, teaching assistants from Tommy and Jude’s school, to help out by providing extra support. Whether it’s for respite, for us to be able to work or to have some time to focus on your other children, that help can be vital.

There’s a well-known quote that says ‘it takes a village to raise a child,’ and often with autistic children the village we expected to utilise shrinks or disappears. There’s nothing wrong in asking for some help, for you or for your child.

5. Professionals are not the experts on your child, you are

On the flip side, as vital as it is to have access to good quality professional support, and as helpful as professionals can be, it doesn’t mean they are always right. It’s easy to feel pressured in these meetings to blindly go along with everything they have to say. If you have a strong feeling or belief about something, speak up and believe in yourself.

You are the one who has spent the most time with your child. You are the one who sees what life is like every single day, the ups and the downs, what works and what doesn’t. Professionals might have a lot of experience when it comes to autism, but you’re the one who has lots of experience when it comes to your child. You are the expert.

What this means is the relationship and decision-making needs to be a mutual one. After all, you’re the person who is going to be there every day putting into practice and dealing with the practicalities of whatever it is they are recommending. Your input is essential too.

Trust your gut as much as you do the input of others.

6. Don’t worry about what others think

I’ll be honest. There’s going to be days where people judge you and your child. It might be in the park, or in the supermarket. It might be during a happy moment, or during a meltdown. But you’ll realise that people are staring. Sometimes they might say something unkind too.

It will hurt. You’ll feel like you want to rip their face-off, shout at them and tell them what you think. Or you might be embarrassed, wishing you were back in the safety of your home, away from the judgmental stares.

If you’re really unlucky it might be a neighbour, or even a friend or family member. Someone you have to see again in the future.

These moments are horrible when they happen, and can be really upsetting. They’re completely unfair, and a sign of ignorance that is on them, not you or your child.

Over time though, you’ll start to care less. Your skin will thicken, and the only thing you’ll care about is the happiness and safety of your child.

There’s been many moments like this over the years, mainly when my boys were young. Nowadays, they’re very rare. Possibly because I’m blind to it. I don’t care what other people think, so I miss their reactions. My focus when we’re out is Tommy and Jude, what anyone else thinks is not my problem.

7. The meltdown will end. It always does

Since becoming a dad I’ve had some of my most heartbreaking days. Days that have been harder than I ever could have imagined.

Nothing can prepare you for seeing your child so upset, and so out of control. Watching Tommy or Jude have a meltdown, especially the big, all-consuming aggressive ones, left me feeling broken.

And you can get caught up in those moments. It can feel like the meltdown will keep increasing and never end. Feel like life will never get any better.

But they do. And it does. The meltdown always comes to an end. Things can and do get better. It might take time. It might not be a straight line of progress, but life will improve.

8. Don’t give up. Nobody knows what the future holds

Nobody knows what the future holds for any of us, and everybody, I mean EVERYBODY, autistic or not is different and unique.⁣⁣

⁣⁣Just because your child hasn’t done something by the age of 5, it doesn’t mean they never will. I’ve known autistic adults say their first words in their twenties. I’ve read stories, and spoken to families of autistic kids who have developed skills, and become more independent much later than expected. When most would have said it’s too late.

Not being able to go to a family party at 6 doesn’t mean they won’t be able to at 9.

A foreign holiday going horribly wrong at 5 doesn’t mean it will when they’re 10.

Struggling at school at 12 doesn’t mean they will be at 15

Never give up.⁣⁣

9. The future is your enemy, the present is your friend

The first few years after Jude and Tommy were diagnosed my mind would often spiral off into the future. My head was full of questions. Will they ever talk, make a friend, play sports, do exams, get a job, get married, or live independently… the list went on and on.

Questions that were impossible to answer, but would come out of nowhere and plague me regularly. And I’d get emotional about them. I’d get stressed, and it would really bring me down.

It’s taken a lot of work, but now I keep my mind in the present as much as I can. I focus on today, tomorrow, and next week, I don’t let myself get distracted by what’s going to happen in years to come.

And it’s made a huge difference. My mind is more free and able to see the beauty in today. To enjoy the life we’re living now rather than being constantly stressed about what’s to come. The present is your friend.

10. Find your tribe

Autism can be isolating. It can feel like you’re alone trying to figure things out, trying to navigate a more complex life whilst friends and family are out there doing the things you thought you and your family would be able to do.

Which is why you need to find your tribe.

I’ve been lucky. Thanks to me starting Stories About Autism, and sharing our lives online, it’s introduced me to people all over the world. Autistic adults, parents and family members of autistic children, and professionals. It’s meant I’ve learnt a lot, and always have a place to turn for advice, or just to share, vent, and get things off my mind.

It’s also given me new friends, some I only speak to online, others I’ve met in real life, and who I talk with regularly.

Now I know that’s not possible for everyone. But I’ve also met other parents on courses, at coffee mornings, through friends, and through school. And there’s no reason you can’t either.

Having friends who just get it is life-changing. Friends who you don’t have to explain every little thing to, who know why you’re tired, why you might have to cancel last minute, or are happy to come to your house all the time as it’s your kid’s safe space.

Friends who have been there and worn the t-shirt. Who knows some of the emotions you might be going through on the hard days, and know how exciting each tiny step of progress can be too.

Friends who make you realise you’re not alone. Finding your autism tribe can do just that.

There’s so much more I could add. Thirteen years worth of lessons, mistakes, and successes. I know how scary and overwhelming those early days can be, so I hope this helps some of you going through that right now.

If you have any of your own words of advice I’d love for you to add them in the comments ❤️