Girls with Autism / Asperger’s Syndrome and Pathological Demand Avoidance (PDA)

Art work by Aegis Mario S. Nevado
Art work by Aegis Mario S. Nevado

There’s wonderful documentary called “Girls with Autism” that’s just been released and in it, for perhaps the first time ever, the  girls themselves, their parents, carers and teachers, all speak openly about the realities of having Autism and the behavioral issues that some of them face within their everyday lives, including the very real and significant impacts that Pathological Demand Avoidance (PDA) has on them.

Pathological Demand Avoidance ( PDA) is real.

And how do I know that it’s real?

Because I live with the consequences of PDA every single day of my life due to my daughter’s experiences with it.

So I am thrilled to see this often debated aspect of Asperger’s Syndrome / Autism finally being so openly accepted and discussed within a format that has the potential to encompass a worldwide audience.

Firstly, let me make it clear that not everyone with Asperger’s Syndrome / Autism, will also experience Pathological Demand Avoidance.

I’m an adult with Asperger’s and I don’t experience it.

My daughter, on the other hand, who also has Asperger’s, does.

For many years I struggled to understand why my daughter’s behavior was so different from my own, when we both have Asperger’s Syndrome.

I mean, surely the fact that we shared a similar way of looking at and experiencing the world, should have meant that we’d be more likely, not less likely, to be able to understand each other.

And yet, it did not.

I simply could not figure out how I could be so peace-loving and routine based, while she could be so explosively unsettled from day-to-day.

To me, our differences did not seem to indicate a similarity of diagnosis.

If anything, they seemed to argue that one of us required a completely different diagnosis altogether.

So great were our differences, that I began to feel that we couldn’t possibly both have Asperger’s Syndrome.

Something was going on with my daughter that could not be explained by the outlining of our understandings of Asperger’s Syndrome alone.

I became so bothered by our differences that, back in 2012, I began writing a few articles which sought to explore and explain why I felt the differences between us were so significant and what such differences could potentially mean for many on the Autism Spectrum.

You can find those posts here https://seventhvoice.wordpress.com/2012/11/09/pathological-demand-avoidance-pda-and-autism/ and here https://seventhvoice.wordpress.com/2012/11/11/aspergers-syndrome-autism-and-pda-is-it-a-comfortable-fit/

Yet, when I first discovered PDA and began expressing my view that it might have been something that was affecting my daughter’s behavior, many adults on the spectrum became quite angry with me for doing so.

Many also suggested that PDA had always existed as a normal aspect of having Autism / Asperger’s and that I should leave it alone as all I was doing was simply adding another label to my daughter and in the process feeding the hungry bank accounts of psychologists.

Yet still I persisted and as I did so I began to understand that Pathological Demand Avoidance is both a very real and an extremely pervasive experience.

One that’s not only felt by those who are living with it first hand, but also felt by those who are trying to continuously deal with the fall out of it, second hand.

The level of additional understanding that PDA gave me, in terms of helping my daughter, was and still continues to be, utterly invaluable as it changed both of our lives for the better.

I went from constantly feeling lost and completely unable to understand my own daughter, (even though for all intents and purposes, given that we both have Asperger’s we should have been on the same page),  to feeling far more grounded, less to blame and completely able to figure out how to approach different aspects of her day-to-day life, without making her feel as if any requests I made of her were necessarily demands that she instinctively felt she had to avoid fulfilling at all costs.

Whilst some Autistic Adults still disagree and believe that PDA is a worthless label, I have found it to be quite literally,  a life saver.

To me it’s not just some sneaky little label that healthcare professionals have dreamed up in order to acquire more money, as some within the Autism community have argued, but rather a valid way of explaining why some individuals on the Autism Spectrum love and find comfort within a routine and why some either don’t or can’t find the same level of comfort in it.

Please, if you have the time, watch, “Girls With Autism” as it successfully debunks many of the myths surrounding Female Autism, PDA being just one of them.

 

 

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8 thoughts on “Girls with Autism / Asperger’s Syndrome and Pathological Demand Avoidance (PDA)

  1. I watched that programme with great interest. Honestly, I found it very difficult to watch in parts. On the whole I think it was very illuminating to anyone who still thinks that autism doesn’t affect females but the PDA-specific parts left me very cold. Very uneasy. Several weeks on, the single line I remember from the programme about the girl with PDA (and for all the wrong reasons) is: “She’s like a wild horse that needs to be tamed.” That gave me such a tight knot in my stomach. That is no way to approach PDA. 😦 Xx

    1. You’re not banned Ms Pris. I closed the page about 6 months ago as I simply had very little time left to dedicate it to it. So please do not take it personally. No one is banned. The page simply does not exist anymore.

      1. Hey, thanks for responding. I eventually figured out that the page was just gone, but I forgot to come back here and make a comment. I hope you’re having a good new year and that closing the page has made life free-er for you.

  2. As an individual with Aspergers, I can understand this to an extent. As a child I often had “violent” reactions to seemingly normal behavior such as being tickled, because to me they felt like an attack, and so I “counter-attacked”, so to speak. This left my parents pretty bewildered. I still have a hard time experiencing some stimuli like loud noises at times, leaving me to suffer extreme levels of heart-pounding anxiety at things like yelling or crying (which my daughter does regularly). This makes it so I’m constantly in fight-or-flight mode waiting for the next loud noise to occur and becoming anxious or upset when it does, unless I can block the noise with something like earplugs. So I attempt to “control” the situation by constantly trying to prevent crying jags, which is an attempt to prevent a panic attack on my part so I can remain calm. This is something I continually have to work on, because kids express themselves with noise!
    Also I wanted to let you know, I’m looking to connect with other Aspie Moms!
    I’ve added your website’s link to my blog (https://thepuzzledmom.wordpress.com/) as a useful resource for Spectrum parents. Thanks for reaching out and putting up helpful material, when there seems to be so little available for us.

  3. Male with aspergers, I kinda think I also have PDA. I often specifically don’t do something that someone told me to do because I consider I don’t need to be told what to do in order to do the thing.

  4. Male with aspergers, I kinda think I might also have PDA, I often refuse to do something when people tell me to do it because I find I don’t need to be told to do the thing in order to do the thing and I don’t like it when people act like I need to be told.

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