Sunday, July 28, 2019

This one is for my Autism Folks.

We know about autism. We know about Anxiety.

But sometimes, it’s more than that.




Our bright, wonderful kids, go from having a regular garden variety tantrum to a full-blown anxiety attack. So what do we do? We try ABA techniques. Rewards for good behavior. Consequences for undesirable. A favorite toy taken away. And sometimes this works.

The next time, the anxiety monster comes around, our ABA techniques fail. So, for this round, we try waiting them out. Sticking to our rules and let them cry it out. “If we don’t bend, then eventually the child will. They can’t cry forever.” And sometimes this works.

But what happens, when ABA techniques fail? Sticking to our rules fail? When star charts and visual systems and bribing and distracting fails? When OT/sensory breaks don’t help?

What if despite your best efforts, the child still has full blown panic attacks and struggles to make it through their day?

What if your child is unable to keep up with the demands of a normal school day? When every task becomes a battle and every transition, a nightmare?

Or even worse?

What if your child desperately wants to do a preferred activity, but when you suggest the same thing, they tantrum? You’re shaking your head because, “Hey kid, YOU wanted to play with slime, so why are you yelling when I’m asking you to come over here, and play?”
Maddening, isn’t it? Frustrating, exhausting, confusing? Also does this sound familiar?

Let’s step back for a moment and change our Lenses. And let me tell you a little about PDA and I’m quoting directly from the PDA society of UK website:

PDA is Pathological Demand Avoidance. It is a widely recognized subset of Autism where there is an anxiety driven need to control and avoid other people’s demands and expectations.

We consider anxiety a large trait of the Autism spectrum, with different individuals presenting with varying levels and manifestations of anxiety. However, for those with a PDA profile the demand avoidance differs from that which others on the autism spectrum might experience, because of its extreme nature and obsessive quality. This extreme avoidance extends to the most basic demands of everyday living.

Now look at this line very carefully:

“Someone with a PDA profile will also have tremendous difficulty complying with their own self-imposed expectations and with doing things that they really want to do,”.

Does this sound like your child?

It certainly sounded like mine.

After a lot of research, my husband and I, in consultation with our team diagnosed my child to have PDA. In the US, it is still not recognized as widely as it is in the UK and Australia, where I believe it is a standard diagnosis.

Unlike the many wacky and outrageous diagnoses out there, PDA actually aims at understanding our child better and how best to help him at his present level. Reading up about PDA has been life changing for us. For the first time, we understood our son as a whole, and how best to help him succeed and have a calm and successful day. I only wish, we had known about it when he was 3 or 4 and going through daily tantrums and power struggles.

Now PDA isn’t a magic fix. Like most good things, raising a child with PDA will need extra patience and love and a complete change in how you think about Anxiety. But this story isn’t about us. It is about our kids, who so often struggle and we are unable to guess why or how to help.

The last 6 months have been so rewarding. Our daily life is much better, because our son feels heard and acknowledged. He is almost 9, and despite his anxiety, improved tremendously. He still has challenges. But now, he is able to talk about them. He tells us what is causing him anxiety, how he feels about it and what are some ways he can help himself.Isn’t that incredible? All this for a kid with Apraxia.

His emotional language has come so far, and he knows how to use coping skills better than he did a year ago. By making accommodations, he’s made huge strides in emotional regulation, social skills, academics, speech and general quality of life. His school district and ABA team, as well as our home ABA team are all well versed in PDA strategies, and together we’re building this huge support system of caring adults who can help him in every setting.
Isn’t that so amazing and empowering?

Now every child with autism and anxiety doesn’t have PDA. But a lot do. I’m sharing our experience because some of you may be reading this and thinking, “Oh my God this describes my child perfectly”. This is for you guys!

PDA isn’t an additional diagnosis. It is simply an acknowledgment of something your child already has and learning how to best support him or her.

Sharing links, questionnaires and resources here:
https://www.pdasociety.org.uk/what-is-PDA/about-pda

https://www.facebook.com/groups/pdausa/

I am also in no way affiliated with any organization or group. I’m a Physician and I hate quack remedies/ anything that is not scientific or evidence based, so I’m not shilling something shady.

I’m sharing because this helped change our parenting lens, and in turn our Child’s quality of life.

Much love and hugs.๐Ÿ’™




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