How to explain autism to a diagnosed child

Introduction

Receiving a diagnosis of autism for your child can bring a range of emotions. Perhaps relief, that what you thought was the case has now been borne out, or maybe fear and unease about what that means for the life your autistic child will lead. However you are feeling, there is no right or wrong way to react, and there is lots of support available, as described in other resources on this site.

One question you will almost certainly need to grapple with quite quickly is what to tell your child about their diagnosis. This resource is designed to help you answer that question, move through the process of telling your child that they are autistic and go forward with them.

Why tell them at all?

It is a fair question, especially if your child seems perfectly happy. Why burden them with what to them may be just a new word?

It is likely that you or someone else, such as a teacher, noticed something about your child that started the journey to a diagnosis, so there is a difference in your child that is noticeable to others. That is not a negative thing – many of the differences brought by autism can be strengths when properly accommodated and we are all different from one another. However, one positive of the diagnosis is that you can now get support and assistance in managing your child’s difference or differences. Depending on the age of the child, they may already be aware of this themselves.

If you now plan to take action to support your child, be it through seeing a specialist therapist or educational support for example, most children will wonder why they are experiencing this when others around them are not. Without information, they may worry that there is something wrong with them or they are doing something wrong, neither of which is true.

One of the most important things that we do when we are growing up is to get to know ourselves. We learn what we do and do not like, what we are good at and what we find difficult, and how we react in different situations. We learn how to manage our lives by resting when we are tired and doing things we enjoy to reduce stress. Being autistic is a vital piece of information that your child needs to help them understand who they are.

Many adults who are diagnosed as autistic later in life express huge relief because it explains much about who they are that before was confusing. They knew that they were different but did not understand why. The knowledge that they are autistic and what this means will be of huge benefit to them as they grow and learn and help them develop to be their true selves instead of imitating others and not understanding why they see things differently.

When to tell them

All children are different, and all autistic people are different. When you tell your child that they are autistic, therefore, will depend entirely upon their circumstances and development.

You should almost certainly wait until they are old enough to appreciate at least on a basic level what their diagnosis means for them, but they need not be very old at all to do so. Most primary school children can appreciate the concept of difference, and if explained to them properly should be able to grasp that their brains work a bit differently to those of others, particularly if parallels are drawn to other differences that they do understand, like different heights or hair colours.

If you decide to wait to tell your child for a period after receiving the diagnosis, which may well be the right thing to do in your circumstances, there are two important points to be aware of. Firstly, it would be very bad for your child if they learn their diagnosis from overhearing others. Their immediate assumption may well be that it is something very bad which is why you have not told them. Secondly, the older they get the more possible it is that they will be teased or worse by others about ways in which they are different. While telling them their diagnosis will not stop this in itself, it will equip them better to handle this through understanding that they are different not worse than others, and that there is nothing wrong with them.

Get the circumstances right

Once you have decided that the time is right to tell your child about their diagnosis, you need to pick the right moment. It is important to do this without making such a fuss about it that the child starts to worry about what is about to happen. Consider where they are comfortable and who they are comfortable with. It is probably best to avoid having too many people present in addition to you and them, but if they have a relative or even a teacher that they are particularly close to, having them there to offer support and reassurance could be a very positive thing.

Try to find somewhere that your child is comfortable to have the conversation with few distractions and where you are unlikely to be interrupted. Again, try to accomplish this without a big build up that may be worrying.

Then perhaps plan something nice for immediately afterwards, like a walk in the park or going for ice cream, to reinforce that this is positive news, not something to worry about, and will not prevent them from being themselves and enjoying life.

What to say

Again, exactly what you say will depend on you, your child and your circumstances. A good place to start may be to talk about differences more generally. Even young children will appreciate visible differences, such as in height and hair colour, and invisible differences such as one child loving spaghetti and another hating or even being allergic to it. You can then move on to how autism is a difference in how we sense the world and think about things.

The vital point is to keep the message positive, and reinforce that differences are a good thing and a strength, not a weakness. If your child has already heard of autism, they may have some negative impressions which need to start to be dispelled. Again, comparisons with other differences can be helpful here. Their friend may not like running but that does not mean that there is anything wrong with enjoying it. Things can be different without one being right and the other wrong.

Do not try to give too much information in the first conversation and allow plenty of time for your child to think through what you have shared with them and ask questions. Autistic people tend to do a lot of thinking, so questions may pop up at all sorts of times for a while after your conversation! If you do not immediately know the answer, do not make something up or try to deflect the question.  Acknowledge that you do not know and say that you will find out, or even that you and your child can investigate and find out together.

How they might react

There are as many possible reactions to a diagnosis as there are autistic children. They may be happy, sad, upset or completely indifferent and just want to go and do something else. None of these reactions are wrong or anything to worry about, or any reflection on how well you have handled the conversation.

Of course, if your child is upset or worried as a result, it is important to give all the reassurance that you can and to reinforce the positivity of the message. Ask them why in particular they are upset or what they are worried about and try to come up with a plan to address it together rather than just saying that it is nothing to worry about.

What happens next

Apart from more questions, try to keep having conversations with your child when you can and check if they have any thoughts or concerns in a positive way. If special arrangements are being made for them at school, talk this through with them and give them advance notice.

It can also be a good idea to talk separately to siblings, other family members and perhaps close friends, again reinforcing the positive message. Finally, you may want to find local groups where your child can meet other autistic children and you can meet other autistic parents and carers.

Conclusion

It is perfectly normal to feel anxious about telling your child about their autism diagnosis. However, with proper preparation, including increasing your own knowledge and understanding ahead of time, together with a determination to view and present it as a positive, it need not be a bad experience for either of you. Many autistic adults report receiving their diagnosis as the start of a positive journey to accepting themselves, and there is no reason that it should be any different for your child.

 

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