Deciding when and how to tell your child they are autistic feels like one of the most difficult decisions you must make. After all you can never un-tell them. Once it is said, there is no going back.
What if you say the wrong thing?
What if they take it badly?
What if they are not ready to hear it?
What if you cannot answer their questions?
With only one chance at this the stakes feel high so, it is not surprising that you feel anxious about it.
So, How Do You Know When the Time is Right?
The truth is that there is no set formula. No perfect age or timescale to follow. Much of it is instinct and observation.
Looking for the signs and feeling ready yourself is vital. In most cases there is no urgency to tell your child and taking a little time to think and plan makes everything feel easier. Try not to rush into it unprepared.
There are 3 main stages to working out the right time for your family.
- Acceptance and Personal Mindset (Are You Ready?)
- Research and Understanding (Do You Know Enough?)
- Observing and Listening (Is Your Child Ready?)
Are You Ready?
Consider whether you have fully accepted that your child is autistic. Can you honestly say that you have come to terms with the diagnosis? You do not have to have every detail worked out yet, but you do need to feel positive about the future.
Think about whether you have worked through all your personal feelings and emotions about your child being autistic? Whether it has been confusion, sadness, anger or even grief.
All of these feelings are genuine and typical human reactions, and perhaps you have felt them all. But, have you allowed yourself to process those feelings? Or, have you tucked them away at the back of your mind?
It is all too easy to forget your own needs as an individual when you are a parent. Your natural instincts to protect your child are so strong, especially after a diagnosis. You often put yourself to the back of the queue because you are so busy worrying about everyone else.
But, if you have not sorted your head out first, you are not going to be fully equipped to help your child understand their feelings. Never underestimate the power of these emotions. Often, ignoring your own feelings just postpones the inevitable. The last thing you want is to crash and burn at a time when your child needs you most.
So, please make sure you go first, take that time now. Give yourself permission to have these emotions. Think honestly about your true feelings.
Please, do not feel ashamed if you are still feeling sorry for yourself or you are angry with the world. After all, you never signed up for this version of life. No doubt you had your life planned out in a certain way and now it is not going to be like that.
You are allowed to feel sad about that. It does not make you a bad person.
Always remember that looking after your family is easier if you look after yourself first. If you are happy and calm, your whole family benefits as well.
Do You Know Enough?
Once you feel mentally and emotionally ready to support your child think about how much you know about autism. Whilst you may now have the personal strength to deal with whatever comes next, it is still a good idea to make sure you can answer most of the questions your child will inevitably ask.
The level of detail and research is a very individual decision.
Are you the type of person that can breeze through an awkward situation just by winging it? Or, do you need to know every detail and every answer before you feel comfortable tackling anything?
For me, I need to know as much as possible first. I don’t feel confident unless I’m super prepared. I plan, I make lists and I read endlessly. I usually need a deadline to make me stop otherwise I’ll convince myself I’m still not ready.
Recognise your individual needs and work with them. A basic understanding of autism is essential though. You really cannot help anyone unless you know how and why autism will affect their life.
Have a look at my earlier blog post https://www.myextraordinaryfamily.com/so-what-is-autism-anyway if you need the basics.
A great source of information can be found at https://www.autism.org.uk
When you are happy with your knowledge and feel confident that you can answer a lot of the questions you will be asked, it is time to consider how to tell them.
I used a beautiful animation called ‘Amazing Things Happen’ created by Alex Amelines to help me explain autism to my son. What the animation describes in 5 minutes would take an hour for me to try and explain verbally. Using something visual that focuses on positives is a great way to start what feels like a difficult conversation.
I highly recommend that you watch it, it really is a lovely gentle and enlightening piece. Here is the link: https://www.youtube.com/watch?v=Ezv85LMFx2E
Is Your Child Ready?
One thing I didn’t have to worry about was whether my son was old enough to understand. Our diagnosis was fairly late, he was 8 years old and very articulate.
In terms of ability he would have been able to understand as soon as he was diagnosed however, I needed time to work things out. There was no rush for him to know and it wasn’t until I felt he would benefit from knowing that I decided to tell him.
If you are unsure when the right time is, start to look for signs.
Listen to your child’s words and watch for any subtle changes in their behaviour and reactions.
Is your child starting to talk negatively about being different? Have you noticed that your stock answer of “it’s great to be different” is no longer making them smile?
Are you becoming more aware that their peers are pulling away developmentally? Is your child struggling more than usual to keep up with their friends’ level of social communication?
If they are confused about their feelings or increasingly worried that they keep getting things wrong. This is the time to start planning to tell them.
Exactly How I Told My Son He is Autistic
I noticed my son was picking up on certain news stories on the radio whilst we were driving places. He would comment on stories that involved mental health issues. He would say, “that’s how I feel Mum” or “I do things like that”. Then Radio One did a series of broadcasts about mental health. The timing could not have been better.
He heard other people describing what it was like to live with OCD, depression, anxiety and who self-harmed. These were teenage and young adult voices, talking honestly about their personal experience.
They were not teachers or doctors or parents boring him with theory, they were real people. He was fascinated. He related to everything they said. He recognised his own feelings in what they said.
He had a million questions, but I could see he was relieved to get some answers too. We always talked for ages after each broadcast. I saw how important it was for him to know he was not the only person in the world that felt like him. He needed to understand what made him different and he deserved to know the truth.
He was ready. I was ready. Now I needed to work out exactly when, where, and how.
I remembered watching a fantastic animation about autism a while ago and thought this would be the perfect way to start the conversation. Here is the link if you think it would be a good way to tell your child https://www.youtube.com/watch?v=Ezv85LMFx2E
I wanted the environment to be comfortable, private, and relaxed. Away from distractions and where no-one would disturb us. As I have the closest bond with him, it was only going to be the two of us.
I didn’t want to announce it or make it a big deal. I was mindful that it should be a situation that I could change my mind about if I felt it was wrong even at the last second. I didn’t tell anyone else in the family what I was going to do. This way there was no pressure on me or my son. I had mentioned to his Dad that I thought I needed to tell him soon, but I wasn’t specific about any details.
I planned how I would start the conversation and what my approach would be, but I didn’t script it out. It needed to be fluid as I had no idea what would happen. I had to be prepared for a bad reaction just as much as a good one.
Then I waited for a good day. A time when I felt it was right for my son. I didn’t want to drag him away from an activity or try and talk to him when he felt tired or over emotional. So, I looked for the right moment and I waited.
There were a couple of aborted attempts but eventually the right time came.
I had decided the car was the best place for us to talk. We usually have our best conversations in the car or at bedtime. Bedtime was definitely not the right time for this conversation, so the car was the obvious choice.
Talking in the car doesn’t feel as intense as it would at home. There is no eye contact. You are naturally sat beside each other or with your child behind you, rather than face to face so it’s less confrontational. It’s a small space so it’s intimate. It’s familiar so it feels safe, like you are in your own private bubble. It was perfect.
I wanted it to feel like a normal thing to do so I asked if he fancied a trip to the supermarket. He likes to come because he usually gets to choose a snack. It’s only a mile away so for the few minutes’ drive we just made small talk.
I parked in a quiet corner of the car park away from any other cars, facing some trees. I told him I just wanted to show him a short video animation he might find interesting before we went in to do the shopping. I positioned my mobile phone on the centre console in the car so we could both see it and set the animation going.
My heart was pounding, and I was close to tears as each word was spoken. Somehow hearing the words again seemed so much more powerful and emotional as we listened together. I knew this was a life changing moment. There was no going back now.
He watched it intently at first, his eyes fixed on the screen. Then I saw glances towards me as he realised that what he was hearing described him. I just smiled back silently, and he continued watching.
By the end he was smiling too.
I asked him if he liked the animation.
“Mum, it was like they were talking about me! I do those things; I feel like that. Does that mean I’m autistic then?”
“Yes darling, you are autistic. That’s why you feel and think and do things differently.”
The relief on his face was incredible. I could see he had long felt frustrated about why he struggled with things that his friends found easy. He’d felt confused about his life being so much harder than it seemed to be for everyone else. He’d felt ashamed of himself for crying over things that nobody else got upset about. Or for getting so angry he’d break things. He’d felt sad and lonely because he didn’t think anyone else was like him.
The pieces fell into place like a jigsaw. Now he had a reason for being different. Now he had his answer.
He had plenty of questions and we chatted for a while in the supermarket car park. I asked if he remembered going to the clinic where they asked him questions and played games. I explained that they were doctors and they were trying to work out whether he was autistic. It took a long time for them to decide but eventually they agreed that he was.
I told him that I had needed to learn about autism and talk to a lot of people to work out what it all meant. I hadn’t been able to tell him until I knew what I was talking about and how I could help him. But now I knew about it so we were going to work together, and he could ask me anything at any time.
We smiled, we hugged and then we went and bought crisps. It was as if nothing had happened but at the same time it felt like everything had changed. I think we both felt a huge sense of relief that months of worry were over, like a weight had been lifted from both our shoulders. It was done.
We have had lots of conversations since this day about what autism is and how it affects his life. We will have many more and it is very much an open dialogue. He knows he can always talk to me and I know I will always need to help him make sense of this complex and confusing neurotypical world.
But whatever life throws at us, we are a team now and we work together to get through it.
Love and Hugs,
Nadine
xxx
All content created for and written by myextraordinaryfamily.com is based on my own personal experience as an autism mother, partner and advocate. I am an expert by experience and do not have official qualifications in autism. I live my daily life constantly learning, supporting and advocating for my neurodiverse family and speak from this point of view. Any advice given is purely based on what has worked for me and my extraordinary family and I offer no guarantees that you will have the same results with your unique family.
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