Over the course of the past six years, I've learnt a lot about autism. I still don't know it all, and probably never will. Before our girl got her diagnosis though, I knew nothing about autism.
So I understand why other parents don't understand.
Why they judge me for the way I parent our girl.
Why they don't see the underlying cause of her behaviour. They can't see her hidden disability. Most of them don't know that she has a certain type of autism called Pathological Demand Avoidance (PDA for short).
Even if they do know, they don't realise what it means to live with this. My job, as her mother, is to explain to others what her difficulties and differences are, so that she is not judged unfairly.
PDA is an anxiety-driven need to be in control and to avoid everyday demands made by others. The more demands, the more anxiety.
Children with PDA tend to be constantly at the tipping point; the fear of expectation can often be enough to push them over the edge to a meltdown.
What we have had to do for our girl, is to remove as many demands as possible. Every day. So we don't impose adult-led routines on her - she doesn't have to brush her teeth if she doesn't want to, our bedtimes can be a bit flexible, and we don't force her to join in social occasions which she would find difficult.
We use PDA strategies to get through every day. We give choices, but not too many, and we don't use trigger demand words such as 'can't' or 'must' or 'need'.
We allow her the chance to say no, but we rarely say no to her - not outright at any rate. We get around it with phrases such as 'that's not a good idea/not going to work right now but maybe another time/maybe xyz would be work instead?'. We recognise her need for quiet time and we don't force the issue of homework - in her mind, work should be done at school.
We realise we are lucky though. Our PDA girl has an older sister, and we've never needed to parent her in this way. Traditional parenting, rewards, consequences, they all work for our eldest girl.
That's why we know that it's different for our youngest. That she has different challenges in life.
Others may think we are 'giving in' to her demanding behaviour, but we see it as helping reduce her anxiety. We wouldn't do it if we didn't need to.
Yes, it's hard work. It's mentally exhausting, trying to stay one step ahead, and thinking always in terms of Plan A, B, C and Z. It can be very isolating, not being able to take part in social occasions with others. It can be very stressful, barely being able to leave the house at all with her some weekends. It can be scary, wondering how we are going to get her to achieve to the best of her potential.
Treated with respect and understanding though, our girl manages to shine despite her anxiety and her difficulties.
Thanks to the flexible attitudes of school staff, and plenty of sensory breaks, she manages to crawl her way through the school day and progress with her learning. I'm sure that she is leaving a huge impression on each and every person who she comes into contact with. Her classmates have been amazing and accepted her for who she is; I'm sure they will turn out to be better, more tolerant adults because of her.
She is different, not less.
Every day is a challenge, and every day is one more chance to educate others, to make society a more accepting place.
May 15th is Pathological Demand Avoidance awareness day. For more detailed information on PDA, please visit www.pdasociety.org.uk and www.pdaresource.com.
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