Jodie: My family's experience of autism and pathological demand avoidance
I have three beautiful children, two of whom are autistic. Our journey with multiple autistic children has certainly had its challenges. And it’s only now, four years after diagnosis and six years after the first referral, that I am beginning to see a positive change in our family dynamics.
Lola is eight and is diagnosed with autism, with a demand avoidant profile - we call it Pathological Demand Avoidance (PDA), after all, that is the correct term. And, hopefully, when those pesky medical journals are updated, we will see a massive change in the way it is diagnosed and the understanding of children and adults like Lola.
You see, PDA is not widely recognised by the NHS and, so, it is a postcode lottery to a diagnosis. This is the reason we decided to go private - at a huge cost financially, but it was ultimately outweighed by the benefits that came with a diagnosis.
The strategies for PDA are significantly different to those that are used for people diagnosed as autistic, and are crucial to the development and well-being of those that have a demand avoidant profile.
Pathological Demand Avoidance is characterised by the anxiety-driven need to be in control and, when control is lost, demands are subsequently avoided. It isn’t a choice for these children and adults and can potentially lead to even avoiding things that they enjoy because of their anxiety levels.
Lola has missed out on so many opportunities over the years because of the lack of understanding and the use of incorrect strategies.
She needs to have choices, but not too many. She needs to feel in control, but not have ultimate control. She needs to know that if she doesn’t want to do something then she doesn’t have to, even when it is something that she actually has to do. Confusing huh? I have spent the last four years, moving two steps forward and five steps back in her development and that is partly down to the fact that she didn’t have a diagnosis.
I spent four years questioning my ability to parent her correctly, questioning the fact that it was, in fact, PDA because, when things are working, they work really well. When things aren’t working it can be catastrophic. I’m not over exaggerating here, it really does have such a detrimental effect on the whole family. We have been at breaking point quite a number of times.
After Lola was diagnosed, we really upped our game as a family and worked at reducing her anxiety, so that she was able to access life to her full potential. Previously we hadn’t been able to fully do this because, without a diagnosis and the professionals questioning you, it makes you doubt your judgment. Lola is now in a fantastic school with a teacher who fully supports her and us as a whole family. She understands Lola’s needs and acts accordingly to her behaviour signals relating to anxiety and demand avoidance.
Understanding my daughter and her conditions has been a bit of a rollercoaster, to say the least. Doubting my instincts and parenting style because of the many professionals who doubted my own judgment, has had a huge negative effect on my self-esteem. But, it’s important not to dwell on the past. I’ve since picked myself up and carried on the huge fight to get the support and understanding my daughter is desperate for.
Understanding my daughter’s needs was crucial to her development and existence in a world where acceptance is far from established.
Lola and I have a huge connection. I can know what she needs in an instant, a fleeting glance, or a grunt and groan. When she jumbles all her words up or describes something in the opposite way, I can interpret what she really means. Sometimes, I can know what she wants or how she feels before even she does. This is key to redirecting behaviour because I can enforce her feelings with acknowledgement and understanding before we reach crisis point.
She relies on me heavily to tend to her needs in the way that she is comfortable, which often results in her masking her difficulties heavily. Even with close family members, she doesn’t relax enough to be able to fully express herself or her needs, which results in lack of understanding and a bottled-up little girl ready to explode. She is my fizzy coke bottle. Shake her up all day and, on return to mummy, she will release the top and explode.
We have experienced behaviour that challenges since Lola was very small. It’s been difficult experiencing such aggression from a tiny child, and it’s exhausting for her. Her tiny body encapsulated with such high volumes of anxiety is heart-wrenching. But, there are moments when she is free from pain and free from anxiety, completely engrossed in having fun. Her laughter is so contagious and her ability to chuckle at her own mistakes can completely distinguish that fire of relentless flames which leaves us with nothing but a burned out family desperate for support.
Those moments are precious. We cherish them and we never ever forget those moments because, although they are few and far between, they are the key to our happiness and the fight for our survival.