Talking to your child about their autistic/PDA identity

A recent debate amongst autistic people about whether Greta Thunberg should of referred to being autistic as having ‘superpowers’ got me thinking. Some felt it was belittling the struggles autistic people also face but I wondered if it was something her parents had said to her to get her through when times were tough? I personally don’t describe being autistic as a super power as it seems too simplistic and doesn’t acknowledge the difficulties that can also be associated with being autistic especially in a world that is not autism friendly (although often autistic people do have super skills in certain areas) but my son and I do joke about his sensory sensitivity being like super powers at times and how he can smell a cigarette from 100 miles away. It’s not said in seriousness although we have talked about potential jobs where some of these sensitivities might be useful as well as the difficulties can causes him when story sensory stimulus can not be avoided or minimised for r one reason or another.

Talking to your child about their autistic identity can be tricky and full of pitfalls especially if you are not autistic yourself.

Talking about the PDA presentation of autism can be even trickier as it is not widely recognised and so your child may not have a diagnoses. I have always been honest and open with my son, it’s helped that his uncles and cousin have autism diagnoses and he can see they are amazing people who also have their struggles so it keeps it real for him. But what if you don’t have any confirmed, openly autistic people in your family where do you start?

However you start, it is important that you do start somewhere

My son’s Dad does not have anyone diagnosed in his family and has little knowledge about autism and my son said the other day ‘does dad know I’m autistic.’ When I told him yes he replied ‘but he never talks about it although he sometimes takes about his friends kid being autistic.’ I think this is a strategy parents sometimes use to talk about autism right try and find an in. I can only speak of how my son felt which was confused and ‘like he didn’t realise or believe that I’m autistic.’ If my son hadn’t felt able to talk about it it might of left him feeling a sense of shame or that him being autistic wasn’t something he should be open about.

Some times parents don’t want tell children because they feel it may ‘hold them back’ or ‘make them feel different’.

Often what a child doesn’t know however can be far harder to deal with and chances are if your child is autistic they already feel different and knowing why they do can only help. Not knowing can also bring other worries like why they are visiting the doctor or things are discussed out of earshot or in whispers or why (for the lucky ones) they have a TA at school.

Not knowing may led a child to think they are ill or stupid or just wrong when actually they simply have a different neurology. My son knew early on because when we got the initial appointment at the hospital he asked why we were going as he had life threatening allergies as a young child so his first thought was that he was ill. I simply explained that his uncle was autistic and he might be too so we were just going to see. He ask what that was and I explained in simple terms that it was a different way of thinking and it had up and down sides and what those might look like, he just said, ‘that sounds like me’. Actually back then I probably said aspergers because that is my brother’s diagnoses and it was just when throngs were changing in the UK so all presentations were now being called autism and I did not yet know about PDA.

It’s been the same all the way along, I have just been honest, open and answered his questions.

As far as the PDA goes I simply told him he was diagnosed with autism but the type of presentation of autism that fits most closely for him is PDA (I mostly use the initials although I have told him they stand for Pathological Demand Avoidance). He asked me what ‘that was like.’ I told him it may make it harder for him to say yes to things and that PDA may worry more but also some have great imaginations, can be very creative and do think of ways of doing things no one else could. Again he said ‘Yep, that sounds like me’.

My son being autistic is part of every day conversation much like him being male or liking Pez, it’s not a massive thing but he knows I get it, that I get him and that I accept and love him just the way he is. It’s not an issue. The only real time it is, is when it is talked about on tv in very negative or patronising terms when I feel embarrassed that he is hearing that. As much as possible we talk about that and how wrong they have it and his right to be respected as an autistic person. He was horrified to find out there were people who wanted to try and ‘cure’ autism and puzzled at how or why you’d expect to cure someone of being themselves.

So in summery top tips are;

  • Be open and honest and nurture an environment where they can be too.
  • Explain both the potential benefits and struggles of being autistic.
  • Encourage connections – whether it be with other autistic people whether that be a family member, a mentor (for example Chris from autistic not weird connects with a lot of autistic young people both on and off line and there are many others who write on line or do YouTube videos many of them young people themselves) or a celebrity who is openly autistic and they can relate to through the media. NB – wouldn’t it be great if we could have autistic mentors for autistic children in schools in a buddy type system? Just a thought…
  • If in doubt ask an autistic – if you are not sure how to approach something or answer one of your child’s questions or they are having a hard time either internally or externally about being autistic then don’t be afraid to ask an autistic adult. You can do so on twitter using the hashtag #AskingAutistics.

Remember your child’s autism is not separate from them it is part of their identity – they are and always will be autistic.

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3 thoughts on “Talking to your child about their autistic/PDA identity

  1. What age is this from? My son is 4 and I’m wondering if I should discuss this with him now. Also I’m not sure how to talk about the pros and cons. Help would be great

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    1. My son was 5 when he went for referral for assessment which was when o frost mentioned it to him. I didn’t make a big thing of it, just answered his reasons for going to the doctor. I am assuming your son is already diagnosed? I think personally I would at first just start dropping the word autistic into conversation at first and allow his natural curiosity to let it unfold over time rather than sitting him down and telling him all. I think around 4 is a time when they really start to notice differences between themselves and others because they start school and more is asked of them, often they might have a teaching assistant and other support and they will notice this. In the early stages with my son I described him having a differently thinking brain, the positives can be hard without stereotyping sio I picked out positives I had seen in him and said some autistic people might be good at maths, notice tiny detail, Know much more than a lot of people their age about (in his case cars) and left him to recognise himself. For the not so positive things I said that because an autistic brain is busy with all this other stuff there are some things an autistic may need more time or help with, like understanding why people do to say things or to be n busy places with a busy brain but that’s ok because everyone is good at different things. There also books aimed at younger children ( because we had autistic family members we never used any as we had living references). We do have its PAnDA thing about PDA which is excellent by Rachel Jackson (she sent me a copy to review), she also has one called ‘the thing’ about aspergers both are available on Amazon. Also as I say in the blog use the #AskingAutistics hash tag on twitter to get more ideas on how best to speak about it. The number one thing is not to say it like it is a tragedy because it’s not. Equally as time goes on do not underplay the difficulties too much. It sounds tricky but I would say with younger children air on the positive side and then as they do get older and notice the struggles explain more about the negatives and work with them to create an autism friendly environment at home and to get the right support in school making sure they know it is a. Not their fault and b. You are on their side and want to understand. Hope some of that helps?

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      1. I have just come across this book about to be published which may also be a useful tool for you. https://www.waterstones.com/book/my-awesome-autism/nikki-saunders/9781528914291

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