Practical Advocacy

Your child has just been diagnosed as autistic. You might be in a spin. You might welcome it. You might not quite know how you are feeling. Whatever your reaction, you’re likely to find that the road ahead involves some new professional people meeting your child and interacting with them. This comes with a whole range of new challenges. Will my child like them? Will they do something that I’m uncomfortable with? How will my child feel about their involvement in our lives?

One of the most practical pieces of advice I had from a Speech Therapist who inadvertently made the mistake of touching my child on her first visit, was to do up a ‘tip sheet’ for people who are meeting my child for the first time. This can help new people get off to a good start with my son and also ease our concerns about them doing or saying the wrong thing. With my son, if you make the wrong move when first meeting him, it’s possible that you won’t be afforded a second chance as he remembers everything. So ensuring the people that need to be in his life don’t get off on the wrong foot is essential.

It can also be pretty hard to tell a professional person to stop doing what they’re doing or to not do it again. They have fancy letters after their names, they are trying to help and if you’re visiting them in their plush office, you’re on their territory. So having a tip sheet that clearly states some simple ways to interact with your child can mean you don’t have to find the courage to speak up and tell them they did something wrong. It’s a horrible feeling to sit there in silence when you know you need to say something and you’ll probably have lots of regrets afterwards if you don’t speak up.

When I put together our list I tried to narrow it down to the top behaviours that are likely to lead to my son choosing not to engage. In putting together your own list, you might like to think about –

How your child likes to be greeted.
Does she prefer people to say hello and make eye contact? Would he rather new people don’t approach him directly and wait until he comes to

How they like to be touched.
Is a gentle touch on the hand likely to feel threatening to her? Is he a big hugger and happy for physical contact?

Topics that are off limits to them.
Is she afraid of clowns or dogs or thunderstorms? Will he leave the room is they start talking about certain emotions like fear or anger?

Sounds that might scare them.
Will she be startled by a mobile phone ringing? Is he going to be challenged by a noisy toy?

Approaches that don’t sit well with your family.
Are you happy for people to talk about your son in front of your son? Would you rather your daughter not be referred to as ‘having autism’, but instead be called ‘autistic’.

The last point on our list was added after a conversation with a good friend who has much more experience dealing with professionals than we do. She suggested that adding a tip on the best way to build connection with my son would be really helpful for professionals and I completely agree. You might like to add your child’s favourite special interest so that people can know in advance a topic that might help to build connection.

Once you have a tip sheet, you might find it useful beyond the professionals you want to engage with. It might be helpful for teachers, doctors and even relatives. If your child doesn’t like the flash when photos are taken, or just doesn’t like having photos taken, you could include that. They might not like being the centre of attention, not enjoy people trying to play with their toys or prefer not to wear pants. If it’s important to your child and your family, then a tip sheet can help to communicate it in a non-threatening and clear way.

How you present your tip sheet is up to you. You could have it made into little cards that fit in people’s wallets, into a flyer, part of a drawing your child has done or as a digital piece that you can email through to people. The result is likely to be that people who care will ensure that they don’t do any of the things on the tip sheet. This will leave your child and your family free from the worry that something could be said or done to upset you and your child. By advocating for your child in this way, the hope is that gentle connections can be made that bring positive
interactions with others into your lives.

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