PD-What?

I am exhausted. Shattered is the shockingly accurate British term for it. I spent the day at parents’ conference put on by the National Autistic Society here in Swansea. It was brilliant! But between an introverted empath in a room packed full of frightened, hurting and desperate parents and the information overload of almost four hours of lectures and discussion, well, it is no wonder.

Most of today was a review of things that I already knew or resources/strategies that I had been using for years. But I did come away with some new ones and was highly encouraged by the new books out on the subject and the more active PDA Society, but I am getting ahead of myself here.

The one thing that was a light bulb moment for me was the realization that I had just internalized all this and now did it so automatically that I had never actually taken the time to share/educate my new partner or PanKwake’s carer. The moment I got home I apologized to both and am taking steps to correct that oversight.

I was reminded too of a ‘finished’ book that has sat in my documents folder for four or maybe it is five years now. It was to be the second book on this subject…but another brilliant Mom out there beat me to it (good on her). And there are a couple of others out there too.

So the question I am left asking myself is…what now? My personal social experiment that is my daughter is going surprisingly well. Certainly better than expected or the ‘average’. So is it too late? Is it worth it to edit and update it? Re-write woulds perhaps be more accurate. It is not like there are dozens of books out there on the subject even now.

I thought over the next few days/week…I would serialize it as it was written then, perhaps adding a bit of explanation like this or a footnote on progress at the bottom. Get feedback from other parents and see if there is still a need for my voice on this one. So here goes…for what it is worth…


PDwhat?: What PDA is and is not

I hate the term Pathological Demand Avoidance. It holds horrid connotations and does not effectively communicate key characteristics of the condition. To me, it seems to feed into the perceptions of our children as willful little monsters, who are simply trying to manipulate people to get their way. Nothing could be further from the truth. Our children are the victims of the millions of spoken and unspoken demands that are placed on us all each and every day.

In its simplest terms, PDA is an anxiety/panic disorder. In an attempt to control that anxiety and panic, our children and young people exhibit an intense need to control their environment and the people in it. When their sense of control is brought into question, usually by those spoken and unspoken demands that we experience every day at home, school or in society, they can react by trying to manipulate people to avoid them and if that does not work with extreme outbursts/panic attacks/’meltdowns.’ If there were a lot of ‘controls’ in that paragraph, it is for a good reason…that is what this is all about.

Demands bombard us all constantly: put on your shoes, pick up your coat, be quiet, sit still, do your writing, and too many others to even count. For most of us, we learn early the almost unwritten code of being a good girl or a good boy and we accept the rules that society imposes upon us all. But for our children, while they may be aware of the rules and may even remind others of them, rules simply do not apply to them.

It is for me one of the most endearing things about my daughter, that she calls into question all of the stupid and no longer useful should-haves that this world clings to against all reason. It does though irritate that world and sets her and us up for almost constant conflict. Even a short bus ride can result in dozens of broken rules, such as don’t talk to strange, use your indoor voice, don’t ring the bell more than once, etc. People look at us, to which she is blissfully unaware, sometimes rude ones even make nasty comments. At moments like that, it seems to me that my child is the sane one, that the world and those adults, who should know better, have another disease, Pathological Bullshit Demands.

What makes the situation so hard is that almost no one has ever heard of the term Pathological Demand Avoidance…and if we use that term all those nasty images of the ‘naughty’ child would likely only be confirmed in their minds. Truth is that on this one, our kids have it right…society is a nasty, demanding task master with little tolerance for anyone or anything that does not fit its mold. They are labeled naughty, trouble-maker and worse. We are bad parents, lack control and ‘what’s wrong with society today.’

To make matters worse, when we do seek guidance, a different perspective and information to help us help our children, we find very little. There is one website, with a few articles written years ago from a predominantly clinical and educational perspective. There is an online forum, which can be a huge goddess-send on those hard days, but so much of it is from that ‘bad day’ perspective that it can be overwhelming at times. What disturbed me most as I began to research this condition was that I discovered there was only one book written on the condition.

Thirty years since PDA was first recognized and there is only one, ONE, 1 book on it. And that book is written by the clinicians, who first developed the theory, from a very clinical viewpoint. While it has one chapter dedicated to families struggling with this diagnosis and its effects on their family, the book is more appropriate for teachers, social workers and other clinicians. This book is intended to translate that information into everyday language for the families living in the aftermath of that diagnosis and to offer practical real world strategies for living happily ever after with your special child.

The first step down that road is to understand what PDA is and is not.

Pathological Demand Avoidance (PDA) is a developmental condition first noticed in the 1980s by Elizabeth Newson in her work with children at the University of Nottingham. Many of these children had been referred to her team for evaluation, often for Asperger’s, but she noted key differences within this group. Primary among those differences were the ability to maintain eye contact and engage in imaginative play.

Over the next thirty years, she and her team worked with individuals, families, educators and others to define what she called Pathological Demand Avoidance; develop strategies that enable these children and young people to function to the maximum of their abilities; and lobbied for more research, services and support for those with the condition and their families.

At this time, PDA is not recognized as a distinct condition in the DSM-V (Diagnostic and Statistical Manual of the American Psychiatric Association), the bible by which most doctors, psychologists and clinicians diagnose mental health and developmental disorders. PDA is currently only recognized as a distinct diagnosable condition in the United Kingdom, where it was first noted…and even here there is disagreement within the scientific and clinical worlds about the validity of it as a distinct condition. In England, it has been placed on the Autistic Spectrum, even though strategies that work well with autistic children fail to meet the needs of this distinct group.

Given recent changes to the DSM, it is uncertain what the fate of this term or others such as Asperger’s will be. Nonetheless, when many parents discover this term, they have a light bulb moment, where for the first time they feel that someone understands their child, all the boxes are ticked for once. In many instances, where families have sought diagnosis, they were told that their child has atypical autism or even Oppositional Deviant Disorder (ODD). But often the families feel that those are not quite right as well. With PDA, they often find that perfect fit for the first time. The term PDA is useful from that stand point alone.

What then are those distinct characteristics that Newson and her colleagues first noticed? How do they differ from Asperger’s, ODD and other disorders? And most importantly, what are their impacts on your child and you?

Over the years, Newson and her team noticed several key differences between these children and their peers, even others with special needs. Those characteristics include:

  • Passive early history in the first year.
  • Continues to resist and avoid ordinary demands of life…strategies of avoidance are essentially socially manipulative.
  • Surface sociability, but apparent lack of sense of social identity, pride or shame.
  • Lability of mood, impulsive, led by need to control.
  • Comfortable in role play and pretending.
  • Language delay, seems the result of passivity: good degree of catch-up.
  • Obsessive behavior.
  • Neurological involvement.[1]

Let us begin by examining each of those characteristics in more detail.

Passive Early History

This is one of the characteristics that has a great deal more variability in terms of diagnosis. Newson noted that while many of these children showed early signs in the first year of their life, not all did. For those that did, it was usually in the form of passivity, a lack of interest in the world around them. They were the ‘good babies’ that everyone prays for. They would sleep for extended periods of time, lay or sit quietly for hours and did not interact with the world around them.

But as she noted, not all children with this condition do. My daughter certainly did not. After a brief couple of months of this pattern as a newborn, she began to quickly assert her need to control her environment and me. Without a vocabulary to adequately describe what was bothering her, she had only the shrillest and loudest cry known to man to communicate her discomfort and even as an experienced mother it was not always easy for me to understand.

So do not be misled by this one, if your child did exhibit this trait, count yourself lucky for the calm before the storm. But if he or she did not, don’t think that let’s you off the hook. It is still quite possible that you have been blessed with one of these unique creatures, a child with PDA.

Resists and Avoid Ordinary Demands of Life

If early passivity was a malleable trait, this one is NOT. Avoidance is the key defining feature of this condition as its name implies. What can be confusing is the way in which many of our children do it. They can become so skillful at this that we may not even realize they are doing it. ‘One more minute’, ‘as soon as I’m done with this’, ‘my legs/hands/head hurts,’ and other seemingly reasonable excuses for why she cannot meet your demand. Of course, if these do not work, she may get delightfully imaginative by pulling her arms inside her coat and telling you ‘I can’t do my writing right now, the monsters ate my arms.’ If all else fails, she may escalate to a meltdown by which point the original demand becomes secondary. Anything and everything to avoid even the simplest and most ordinary of demands.

Surface Sociability

This is what can be most confusing for not only the public, but many clinicians and educators. These children appear to be outgoing, kind, friendly, even extroverted unlike most others on the autistic spectrum. My daughter is a prime example of this. The moment that we get on a bus or leave the house for that matter, she is certain to start a conversation with someone.  Her favorite is other mothers, who pull their buggies into the pram bay alongside of us (for my fellow Americans…’dem is fancy words for a stroller). She will immediately begin asking questions, some quite personal. She will tell you everything about her and her condition. But it is clearly she who is in control of the conversation and any attempt to change the subject will be met with counter measures to get it back to the topic she wants/needs to discuss.

She is also extremely loving and affectionate, almost inappropriately at times. She will hug me and kiss me and others close to her. But she will also touch, rub against and try to hug virtual strangers. At the pool, she would go up to dads playing with their children and insert herself to the point of ‘jumping’ on these poor men. It is though all on her terms. She is my cat child. By that I mean like most cats, she wants stroked when she wants stroked, and any attempt by you to give them outside of that will result in her running away. If not instigated by her, affection becomes another demand to be avoided.

Another key difference of these children’s sociability is a total lack of understanding of social hierarchy. Adult/child, old/young, queen/pauper. They simply do not recognize the difference or care. For me, it is one thing I adore about Emily. Why is the queen any more special than the homeless man on the street just because of who she was born to? But the flip side of that coin is that Emily does not understand or accept societal strictures of childhood. She has even gone so far as to offer childrearing advice to other mothers on the playground.

Similarly, pride and shame hold little meaning to our kids. Most children take careful note of how others react to their behaviors and respond accordingly. It is a useful parenting tool as most will quiet quickly if you point out that people are looking at you. Such shaming is completely useless with our kids. They simply do not care how people view them…or you. It is one of the reasons that public meltdowns can be extremely draining for the parent of a child with PDA.

Impulsive, Rapid Mood Changes

Parents often say…my child can go from zero to sixty (a hundred, a thousand, a million) in two seconds flat. As mentioned earlier, when all other attempts at avoidance have failed, these children will most often experience a total and complete emotional meltdown. These episodes are perhaps the hardest part of parenting our special children. They are exhausting for us…our children…and just about everyone around us.

I have an obsession (we’ll talk more about those in a minute) with volcanoes. If I had the money and the time, I would go so far as to go back to school to become a volcanologist. I watch every television show I can find on them. One thing that I learned from watching these shows is the mechanism of a volcanic eruption. Magma or melt builds up in reservoirs or pools deep beneath the surface of the volcano until it reaches a certain point. At that point the only way to relieve the pressure is an eruption. It becomes inevitable.

Our children are little volcanoes. They endure and endure and endure…and endure the demands of life until suddenly it all becomes too much for their little minds. And they explode. Violently. Sometimes without warning. And everything and everyone around them takes the full force of the explosion. It is important to remember though that they bear the burnt of their explosions. It is exhausting for them as well as us.

But it is equally as important to remember that those explosions are a natural force. Scientists studying the eco-systems in and around Mount Saint Helens after its explosion discovered that life returned amazingly quickly and in some new and delightful ways. Naturally occurring vegetation that had been replaced with ones introduced by man soon resumed their station at the top of food chain. All was right and beautiful with the world…until the next that magma reaches that point and it all blows…AGAIN.

Yet even between these volcanic explosions, we often notice an impulsivity that is sometimes misdiagnosed at ADD or ADHD (Attention Deficit and Attention Deficit Hyperactivity Disorders). Our kids can lack focus, bouncing from one activity to the next without thought for even safety. The man is walking his dog and our children simply has to pet it. It does not matter that that dog weighs twice as much as they do or that it has muzzle around its snout. Those warning signs that the rest of us would clearly read and take into consideration before acting upon our impulse simply do not register against the overriding need to pet that dog…NOW.

Active Imaginations

Along with their surface sociability this is the other characteristics that is markedly different than other children on the autistic spectrum. In fact, not only are they capable of role play and pretending, they may actually prefer it and use it effectively as another means of avoiding demands. Monsters eating their arms so that they cannot do their writing is just one example.

I remember a phase that Emily went through where she would hide for a moment under a blanket. I would find her and she would throw off that blanket almost like a new baby emerging from its mother’s womb. She would then introduce herself…I’m Emily Six (or five, seven, whatever, we went through several of them during this period). She would tell me that my Emily was dead and she had come to take her place because her mother hurt her, did not feed her or something similar. Until she decided to go back under that blanket, she would not respond to simply Emily, she insisted on being called Emily Six. And she even took on decidedly different characteristics, almost like a split personality disorder. I miss Emily Six sometimes, her behaviors were decidedly easier to manage actually.

This is an extreme example, but even in their day-to-day activities our children are likely to be more creative than their peers, especially others on the spectrum. They prefer music, art, cooking and other crafty outlets to traditional subjects such as science, math or even reading. It makes sense, why read about boy wizards when you can be one, I suppose. This imagination and creativity can be their greatest strength and one that we can build upon as a bridge to the ‘real’ world, but more about that later.

Language Delay

This was one of our first clues that something was wrong with Emily. At two and a half, she was not yet talking. We sought help from our health visitor/nurse only to be dismissed out of hand. She pointed out that as the youngest child Emily did not need to speak. We and her siblings were quick to meet her needs without them being vocalized. But over the years, it remains one of the most obvious symptoms of her developmental delays. It has caused untold stress due to bullying on the playground.

Please do not be confused, our children can and may have an age appropriate vocabulary or even sound like little adults. But their pronunciation may be slurred and even not intelligible, often resulting in increased stress levels.

Another thing to consider is that studies are beginning to show that our children may require additional time to process language. This is important in terms of giving instructions. Our kids may need a couple of more moments to take in and analyze your request before they comply.

One point that Newson and her team made was that they felt language delays were the result of passivity and that the children tended to catch up. From personal experience, I disagree. Almost five years since we first noticed Emily’s delays and the gap between her speech abilities and her peers continues to widen.

Obsessive Behavior

This is one characteristic that our children share with others on the autistic spectrum.  Whether it is the need to touch every light post, avoid every crack in the side walk or collect half a dozen different things, you and they may find yourselves controlled by these obsessions.

What’s more, these inanimate objects may take on mythical proportions, may mean more that human contact even. Our apartment/flat is well on the way to becoming a hoarders delight. We have a dozen or more collections: Pez dispensers, Bin Weevils, Trashies, Barbies, stuffed animals and even a five gallon bucket of shells, conches and leaves. None of it can be disposed of…without risking an extremely violent meltdown.

One thing to note is that these obsessions can extend to people. Friendships, which are decidedly one-sided and superficial anyway, are collections. Our children can fixate upon a favorite teacher, a kind neighbor and most especially the empathetic child, who is destined to become their friend.

Neurological Involvement

Fancy words, simple meaning. In addition to PDA, your child’s brain is likely to have other irregularities. At times, it may seem more like an alphabet soup: ADD, ADHD, SPD, ASD. The thing to keep in mind is that a brain that has one problem is also likely to have difficulties in other ways as well. Emily again follows this pattern. In fact, her diagnoses include ADHD, SPD and even epilepsy. They are all entwined as well. When she is having more difficulties with the stress and meltdowns of her PDA, she is also likely to have more seizures.

SPD remember that term. If you have not heard of it already, you are almost certain to hear it again. SPD stands for Sensory Processing Disorder and it is almost always a co-morbidity with anything on the autistic spectrum. In fact, many of stressors of everyday life can be attributed to this condition. In essence, SPD relates to how the brain receives and processes the input from our senses: sight, sounds, smells, tastes and touch, but also movement and pressure on the joints. Our children may be more or less sensitive to these inputs. They may crave constant motion, avoid certain (or even most) foods, smell things that you and others do not even notice, cover their ears around loud sounds and turn their heads away from bright lights. Or the reverse. Or any combination of sensory seeking or avoiding behaviors.

***

So what do you think? Do any (or all) of those sound familiar to you? Did you like me say Yes! when you saw a list of behaviors that almost exactly matches your child? If so, you are not alone. And that is something to remember as well…you are not alone. You may well have felt like it, but I hope by the end of this book you will not anymore. But you may still feel a bit lost, uncertain, wondering now what. So what? A label does not offer the answers. The rest of this book attempts to offer some options from the perspective of a parent, a real life expert, someone living in the trenches of this condition each and every single day. I hope you have found enough to intrigue you so far and that you will join me on the rest of this exciting journey.

[1] Christie, Phil; Duncan, Margaret; Fidler, Ruth; Healy, Zara (2011-11-29). Understanding Pathological Demand Avoidance Syndrome in Children (Jkp Essentials) (p. 13). Jessica Kingsley. Kindle Edition.

 

The Great Pink Divide…Is it real?

Once upon a time…it was assumed that autism/Asperger’s was a boy thing. That girls simply did not suffer from this milady. Then it was recognized that some did but ‘experts’ still estimated that the ratio was 8 boys to every 1 girl. Dr. Tony Attwood shocked some when he said that he believed that ratio was more like 4 to 1. I used to believe that it was 2 to 1, but recently as I have observed and studied it more in PanKwake and other girls, I have come to question even that assumption.

I no longer believe there is any difference along gender lines in the prevalence particularly of Asperger’s or high-functioning autism. Asperger’s is just as likely in pink as it is in blue. The difference is not in them (our children), but in us and the experts. We fail to see it, misdiagnose it and leave them adrift because of our prejudices, misinformation and false assumptions. Plainly put, we cannot see it because we are not looking for it.

Have you ever played those spot the differences games in newspapers or magazines?

Never as easy as it looks...
Never as easy as it looks…

That is essentially what getting a diagnosis of autism or Asperger’s is. There are no blood tests, not even a multiple choice questionnaire that doctors sometimes use to diagnose depression and/or anxiety. It is all a matter of long history taking that can relies heavily upon parental memory of early development, observation of the child’s behaviors and most importantly interpretation by an ‘expert’ who has very little experience with your child. Despite fancy names like ADOS (Autism Diagnostic Observation Schedule), it is still a matter of OPINION…one experts or a panel. And the next one may see things differently.

If that expert or experts subscribe to the view that Asperger’s/autism is a ‘boy’ thing then they can all too easily miss the signs in girls, who do tend to express it differently than their male counter parts. Likewise, the ‘tests’ themselves are skewed to looking for those traditional or male expressions of the condition. So girls, who may have much less trouble making eye contact except under extreme stress, may not score high enough to tick their boxes.

The problem is that it is a vicious cycle that prevents our Aspies in pink from getting the interventions and help that they deserve. But until the ‘experts’ begin to sit on the play grounds as this mom does and just watch her daughter play with other kids…and see how many other girls in that park/school are facing those same challenges, nothing is going to change. You see all the scientific journals, medical texts and DSMs (Diagnostic and Statistical Manuals of the American Psychiatric Association…the bible for diagnosing ALL mental conditions including autism…and the idiots that took away the differentiation between autism and Asperger’s) can never replace a mother’s instinct.

And this mother is telling you right now…there are A LOT of Aspie girls in pink out there, who we are letting down. We need to raise the alarm, shout and scream until the ‘experts’ get it…Autism/Asperger’s is NOT a boy thing…it is a HUMAN one.

A Growth Spurt…

We are all used to them. The kiddo seems to have grown like Jack’s bean stalk overnight. Pants are too short. Shoes too tight. And we rush off to replace their whole wardrobe. But what we are just beginning to understand is that our children’s brains continue to grow over their lifetime. And that they too can experience sudden bursts of development that change everything overnight. PanKwake has just been through one of those…and I am loving it.

Not that many years ago, scientists believed there was a ‘golden’ period of development between birth and five during which children’s brains grew and developed. They even believed that if children missed key milestones during this period, they were destined to remain behind their whole lives. As the parent of a child, whose autism/Asperger’s was not even diagnosed until she was seven, this was a depressing concept. All those missed opportunities for ‘early intervention’ angered me.

BrainBut as part of my continued search for the right options for my Aspie girl, I take online courses in psychology, child development and education. One course that I took last year called Good Brain, Bad Brain helped me to come to terms with all of that. One of the things that reassured me and completely transformed my paradigm was that the brain NEVER stops growing. Yes, we are born with a certain number of neurons. But more important than that are the connections they make. And you keep making those throughout your lifetime.

An analogy to this is FaceBook. If you think of yourself as a single neuron, you can make many connections…friends. And you can keep making those. Yes, occasionally, you lose a friend here or there. But up to something like 5,000 you can keep right on making new friends…no matter whether it is your first day on FaceBook or if your account is years old. What’s more, all of those friends are constantly making new friends. And together you form an interconnected network of friends…neurons.

And after a rough few weeks/months, it seems that PanKwake has made huge strides forward. Of course, the hardest part of all this is realizing when something is simply an issue of not having the right neural pathways. When the best and only answer is to simply…wait for the brain to grow. That is not easy, especially when your child is sometimes years behind their peers in terms of those pathways/connections.

But trust me…it is worth it. Next time, I will talk about one way of measuring that brain development…

Lost Opportunities…

I was cleaning out old photos from my Dropbox today. I came across hundreds of them from the small community nursery that PanKwake attended for two years. I was on their management committee, did their grants and monthly newsletters so that is why I had so many. But obviously, there was no reason to keep five year old photos of kids that we no longer even had contact with.

One of the few pics I found of PanKwake. You can almost see the A-word written on her face. Why couldn't the 'experts'?
One of the few pics I found of PanKwake. You can almost see the A-word written on her face. Why couldn’t the ‘experts’?

Do you know how many photos I found of PanKwake out of those three hundred plus? Less than a dozen in two years. Some children who were there only a few months had more photos than she did…and she spent two years there. And even the ones I did find…told her story…the story of autism/Asperger’s. She was alone or hanging back from the others. And that was why there were so few of her…none when the man brought the petting zoo, none on the circle time mat, even with Santa there was only one of her.

But what bothered me most was the three or four years of lost opportunity. You see that nursery was excellent. They recognized that the way PanKwake was developing was not ‘normal.’ They even did their best to get her the intervention that she needed…deserved…should have been provided. But all it resulted in was one hour with the council’s early years SENCo. One hour and the woman wrote a report that basically said…she would catch up. I still have that damned report.

How different our lives might have been if back then she and we had gotten the support we needed. But we did not…we waited four more years. Had to take her out of school and home educate her when the school too failed to see what I had seen since she was two years old.

Days like today are not easy…cleaning out old junk, not just the photos but the reminders they bring with them of…what if’s…should have been’s. But we will never know because that was not the path we were given. But looking at all those other smiling faces compared her more stoic was hard…a reminder. But forgiving that SENCo, the school, her doctors…and most of all me…for those lost opportunities takes a lot more effort than simply click and delete. I wish it could be that simple.

All I can do now is advocate for more early intervention/diagnosis of high-functioning autism/Asperger’s. But it will come much too late to help my PanKwake.

I want my ‘rose’ back…

What’s in a name? that which we call a rose
By any other name would smell as sweet.

Act II Scene II Romeo and Juliet by William Shakespeare

In May 2013, the DSM V (Diagnostic and Statistical Manual of the American Psychiatric Association) changed how autism was diagnosed. One of the biggest changes was that it did away with the diagnosis of Asperger’s Syndrome. Instead individuals like PanKwake are merely referred to as ‘high-functioning.’ But that is not accurate, fair or right to her…or to us parents.

The truth is that I have about as much in common with parents of those on the non-verbal end of the spectrum as I do with ‘normal’ parents…maybe even less so. I am not to discount their struggles. I am grateful that 90% of the time PanKwake can tell me what she needs/wants. I realize too that I have way more to be optimistic about her future than they may. I will not even pretend to say I ‘understand’ their reality…I do NOT. And I will not demean their reality with sympathy or pity. I will say I admire your courage on your path.

Aspie is not somewhere in the middle between non-verbal and 'normal.'
Aspie is not somewhere in the middle between non-verbal and ‘normal.’

But what this ‘new’ and easier for the professionals diagnostic criteria fails to understand and capture is that the difference between my child and theirs is so great as to be on a different plane. The professionals claim that this is covered by the word ‘spectrum.’ That does not do it…this is no number line with non-verbal at one end and ‘normal’ at the other with PanKwake and Aspie’s somewhere in the middle.

It is apples and oranges, folks.

While I may have a small taste of the non-verbal struggles when PanKwake is in the middle of meltdown and cannot for the life of her tell me what she needs/wants. But I cannot appreciate the joy of exchanging a card for a glass of juice for the first time. Neither can that parent, whose child ‘looks’ autistic, understand what it is like to be judged every single time you leave your home. For your child to be ‘naughty.’ For you to be a ‘bad’ parent. When people can ‘tell’ something is different, they are most often compassionate, understanding and caring. They will go out of their way to help you. I learned that when I dated a man, who was wheel chair bound due to MS. But those exact same people have no problem looking down their noses on you and your ‘naughty’ child.

A better representation
A better representation

The truth is that autism is not that straight line…it is much more like this…three dimensional with as many points as there are individuals with it.

What is more this new model of one-size fits all linear ASD means that those like PanKwake are left on the outside looking in. I used to go to a support group called ASD4Tea. I quit because I have about as much in common with them as I do the local Mums club. We are dealing with different issues. But the organization that runs those meetings…gets to neatly tick off the autism box without ever meeting our needs. That is a hundred-fold more true for the ‘major’ autism groups is this country…they are all about the more severe on the spectrum. If you look at their newsletter, Asperger’s gets two-inches on page 3. We went to the Autism Show last year and probably will again this. BUT it is all about them.

And I hate to say it, but that is what lumping all of them together does….it creates an US and THEM mentality where we are fighting for different goals and resources. In fact, I was first inspired to write this by a blog I saw on my Twitter feed. The woman had three daughters at the other end of the spectrum. She was talking about how angry she got when she saw words like ‘acceptance.’ She specifically hit me hard when she spoke about seeing autism as a ‘blessing.’

I do…I teach PanKwake that she is a SuperHero…the real X-Men who like Jean Grey have super powers that she needs to learn to train. I even say that she is the next jump in human evolution…homo autistica. But I am changing that…homo aspergeria.

I get what this woman was saying…she fears what will happen to her daughters when she dies. I look forward to PanKwake growing up…believing that the older she gets the more she will have to offer us poor ‘mortals.’ I cannot understand that woman’s pain. But neither can she pretend to understand ours. And professionals lumping our children together is the same as putting asthma and lung cancer together. They may both cause shortness of breath. They may both affect the lungs. But that is about all they have in common.

It is not fair that woman has to feel angry about the word ‘acceptance.’ BUT neither is it fair that those of us with ‘high-functioning’ children are dismissed, expected to force them to just ‘act normal,’ go to ‘mainstream’ schools, and have no support group of our own. NO voice. Not to demean the struggles of those parents…but we have totally different needs and wants for ourselves and our children. And ACCEPTANCE for who and what we are is chief among those.

When PanKwake was first diagnosed, I was relieved that it was by DSM-V standards as ‘high-functioning’ (which is itself disrespectful to what…’low-functioning’?). I was happy because I thought it would make accessing services easier. But the more I learn and see the more I want to scream…IT IS F’ING ASPERGER’S! THERE IS A DIFFERENCE YOU, IDIOTS!!!

Because calling a lily a rose does not make it so…not all flowers are roses…and not all Asperger’s is autism.

Autism in Pink…

I saw this online article today on my Twitter feed: 7 Celebrities with Autism.

What drew my attention first was the sheer number of women who made that list…five out of the seven are women!

Yet it is still a prevalent myth that autism is a ‘boy thing.’ Statistics, of course, have varied over the years. It was once assumed that autism was eight to ten times more common in boys than girls. Currently, those figures are between four and four and half times more common. Asperger’s (now called high-functioning autism like PanKwake) expert, Dr. Tony Attwood believes it to be as low as three. Personally…I do not think there is any difference what so ever. That’s right, I said it, I think just as many girls have autism as boys.

So why those statistics you ask? Because of two things:

1) Generally speaking science has always agreed that girls develop socially more quickly and easily than boys. Dr. Attwood puts this another way…boys with autism just make more noise about it, act out more. It is a matter of the squeaky wheel getting the grease.

This pink t-shirt I made for PanKwake says it all.
This pink t-shirt I made for PanKwake says it all.

I would call this the ‘good girl’ principles. Girls are acculturated and perhaps genetically/physiological inclined to be less ‘trouble’…quieter…’good girls.’ Not that PanKwake fits that mould mind you…she gives ‘em hell with the best of the boys.

But when she was in school that need for approval…to be like the other kids…kept her ‘flying’ under the radar. She like many girls on the spectrum learned to mimic the behaviors that got her approval. In fact, if you looked at her school reports you might call us a liar or over-anxious parents.

According to those reports, she was only behind in a couple of areas. But the truth was that she had attached herself to a very intelligent girl with care-giving tendencies. PanKwake’s inexperienced teacher failed to notice that this girl was doing most of her work for her…and that even when she was not PanKwake merely copied her…her worksheets and her behaviors…for as long as she could. School only had problem with her at the end of the day when she was so tired she could not longer keep up that coping mechanism.

Dr. Attwood calls this the Cinderella effect. Girls on the high-functioning end of the autistic spectrum dress themselves up…copy other people…put on masks…play a role…however you want to describe it. Until the clock chimes midnight…until they become so overstimulated, so exhausted that they can no longer keep up the charade. And their gown turn back into rags. Their coach becomes a pumpkin. And they lose their glass slipper. That brings us to the second reason…

2) Because of that ‘myth’ that autism is a ‘boy thing,’ even when the ‘experts’ do see girls on the autistic spectrum they are all too often misdiagnosed. The experts cannot see the tree for the forest.

This happened to PanKwake too. It took us two years to get her diagnosed. After we took her out of school, the sad truth is that I doubt we would have ever gotten the diagnosis if we had left her in there with the blame games that the school played with us and others…she needs more discipline at home, she’s not getting enough sleep, it is just your separation. Anything except admit that there was a problem that they needed to address.

We went through…ADHD (Attention Deficit Hyperactivity Disorder)…Sensory Processing Disorder…Global Developmental Delay…and I might have forgotten one or two. But in the end, it was so obvious that even they could not deny it…PanKwake only made it a third of the way through the ADOS (one of the diagnostic tests for Autistic Spectrum Disorder). She crawled under the table and curled into a fetal ball. After than they made the diagnosis…without further tests or evaluations.

If the ‘experts’ could/would take off their rose colored glasses that autism is a ‘boy thing,’ I believe they would see…there are just as many girls in pink on that spectrum as there are boys.

But one thing that this list and the Cinderella effect do highlight is that for females on the high-functioning end of the spectrum the prognosis may actually be brighter…they may be able to train themselves to be that ‘fairy princess’ at the ball for longer and longer. They may even be able to ‘fool’ the world into thinking they are ‘normal.’ But the thing is that clock always strikes midnight sometime…so we need greater understanding and awareness of how ASD affects girls.