What X-Men teaches us about autism/Asperger’s…

On Monday, I used this scene from X-Men: First Class when I talked about it being society and not our kids that are disabled. But this one is so important that I thought it deserved its own blog.

I think that Magneto/Eric makes a very valid point…especially for our Aspie kids. They spend so much energy, effort and time trying to ‘look normal’ that they cannot truly concentrate on anything else. I know this was especially true of PanKwake during her one year in ‘school.’ She spent the whole day trying to mimic the behaviors of the other kids that it exhausted.

To make matters worse…the one time during that long day (especially for an Aspie four year old) that she dropped the mask, she was penalized. You see this school had the absolute worst reward system on the face of the earth…only your last action counted. That’s right…one screw up and you are a failure was the message they taught our kids. They had a board with circles on it…gold, silver, green, yellow and red. Every child had a name card and the teacher would tell them to move it from one circle to another.

Because PanKwake had spent the whole day trying to ‘look normal’ by the end of the day she was exhausted. Of course, to make matters worse the end of the day was when everyone cleaned up…one of her least favorite things to do. So every day, she ended up on red or yellow so she did not get a reward. And those bullies who had terrorized her on the playground got a prize…because they picked up a couple of toys. WTF? So I was left with an exhausted and cranky child to get home. A near impossible task without a meltdown.

The thing is that is how society as a whole treats its people…’normal’ or special needs. They judge you on one single moment…and not all the good that came before. They cannot accept anything that does not exactly fit its mold of perfection. So when your ‘blue’ comes out like Raven’s/Mystique’s…even for a second…you are rejected. All you did before does not count. And to make it worse…neither does all the good you do after. That single ‘blue’ moment defines you…sometimes forever.

We need to move away from that…we need to face head on the damage that society is doing…not just to our Aspie kids but to all of us. We need as they do to reject old rules and norms that divide us…and begin to make the new norm…ACCEPTANCE.

And I am afraid that while Charles Xavier’s ideals may appeal to my optimist, my realist side stands firmly in Eric’s camp…peace was never an option. Society is too entrenched in the old ways to willing embrace anything that is different. The only way forward is MELTDOWN…like our children to stand by their sides and militantly shout, kick and scream our right to be different. As a seamstress, I know that when a garment is sewn wrong the only way to fix it is to first rip it apart.

And that is why…ADVOCACY is the only way forward. In your face, kiss my *grits*, I have the right to be here, to use this facility, to do this thing. Of course, we can first try Dr. X’s nice way…sometimes individuals themselves will accept our ‘blue-ness’ but society as a whole…will not…unless we make them. We have to demand our rights…just to exist. But then too that is our ultimate gift and purpose…to drag society kicking and screaming into the new age.

So I stand with Magneto…and Mystique…Mutant and PROUD!

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The Next Jump In Human Evolution…

When it comes to Asperger’s or high-functioning autism as the ‘experts’ call it these days, I have a bit of a quirky take on it. From the beginning, I have taught PanKwake that she is a Superhero. I compare her to Jean Gray of X-Men fame. I tell her that we simply need to train her brain to use its super powers. But to be fair, I am more of a Magneto than I am a Dr. Xavier. I do believe that Aspies are ‘the next jump in human evolution’ as Magneto says in the first X-men movie after Charles Xavier corners him following a congressional meeting on the Mutant Registration Act.

The problem for our Aspie kids is the same as it is for mutants…

Magneto 1

So instead of embracing all the wonderful talents, gifts and special abilities that our kids bring to it, society tries to force our square pegs into their round holes. Therapies and interventions whose only goals are to make them act ‘normal.’ Like that is a good thing? Schools whose ideas of ‘mainstreaming’ is to set them up for being bullying by failing to educate those ‘normal’ kids about special needs.

In the end…like Magneto’s motley crew of mutants…too many end up withdrawn, isolated and so damaged that those ‘experts’ actually believe that social anxiety disorders are a part of Asperger’s/autism. The truth is that when supported and given a 100% bully free environment, our Aspie kids can integrate and assimilate. How do I know? Because PanKwake does it all the time when given the simple accommodations that she needs to address her sensory issues and fixations.

This whole idea that it is our children who have social issues is BULL SHIT. The truth is that society itself is so frightened of anyone who is different that it is the one broken…not our kids. Our kids are strong and beautiful. They see people and society for what it is. They simply refuse to accept those dumb ass rules that are only because…that’s the way it had always been done.

And that is why society needs them…more than they need it. Because society is broken. It is still trying to follow rules that are a century out of date. That simply no longer apply in the digital, free-thinking world in which we live now. They offer the hope that it needs to keep itself from self-destructing with hatred, greed and hubris. They offer a new understanding.

Only one thing…for them to move into that role…which I believe is why there are so many of them and more being born every day (forget this one in 84 or whatever…I spend enough time on playgrounds…honestly the number is 1 in 4 or so)…is that their parents need to stop stifling them…stop trying to make them fit in the round hole…and help them celebrate being beautifully square.

Here is a bit more of my Magneto wisdom for you, folks…

Disabled?!?

I have been battling with my local community center over my Aspie (high-functioning autism) daughter attending the trampolining class for ‘normal’ kids her age even though they offer ones separately for the ‘disabled.’ PanKwake has been attending for about three months now and it was mostly fine.

Except for one mother and grandmother, who resent and complain about the one modification necessary for my child to access them…she is fixated on one specific trampoline. The other week they instigated a horrendous meltdown by putting their child on ‘her’ trampoline even though there were two others open. As a result there has been escalating issues (which hopefully are now solved…fingers crossed). The kicker…these people have ‘disabled’ children themselves…a girl with severe cerebral palsy and two boys who attend the same class that are also Aspie. Problem is that this woman demands my child attend that ‘disabled’ class. And I refuse.

Why? Because the greatest hope for my child is mainstreaming. Not the crappy stuff that schools do, where they force our Aspie square pegs to fit into the round holes of society. But true integration whereby my child is able to access as many activities as she can comfortably manage with some modifications. Equally though where the ‘normal’ children are taught understanding and compassion. Where being different is not frowned upon or some secret to be hidden but rather something to be celebrated…not just PanKwake’s differences but the other children’s as well. In other words…a place where acceptance and tolerance are the norm. In this way, PanKwake’s limits are pushed and she is challenged to be her best. And at the core, the next generation are taught values for the 21st century.

This is not to say that we do not support special disability classes. We utilize the Thursday night swim sessions for the disabled almost weekly. In that case, the swimming pool is simple to crowded, loud and chaotic for her to enjoy in a general swim session. These twice weekly ‘special needs’ sessions have only a couple dozen people and PanKwake benefits from the more relaxed set of rules. But it in no way offers the same quality of socialization. She virtually ignores most of the other people in the pool for one simple reason…

12009603_1642281972654190_8146444174564625368_nFor those with Asperger’s or high-functioning autism they have far more in common with ‘normal’ people than others lower on the autistic spectrum. And with some understanding and a modicum of accommodations all can benefit from an inclusive environment. PanKwake by learning and practicing those hard to understand social cues that will allow her to become all that she can be…and those ‘normal’ kids by having core values such as compassion, understanding and acceptance modelled for them. Values that apply not just to the disabled but to…race, religion, sexual orientation and a hundred other things.

Next Monday I will take this a bit deeper and explain why I think that it is not PanKwake who is ‘disabled’ but our society.

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 and Education: A Reality Check – Part 2

One important thing to remember about autism is that it is called a spectrum disorder for a reason. Like the word ‘normal’ it is as varied as the people who have it. There is a popular saying in the autistic community: ‘if you know an autistic person…you know one person with autism.’ Autism is everything from the non-verbal child who sits staring and rocking…to the Hollywood savant Rain Man…to PanKwake, a 9 year old body with a 3 year old’s impulse control and the wisdom of a septuagenarian…to those so high-functioning that you dismiss their autism as eccentricities because they are billionaire computer moguls. The autistic spectrum is a broad and as elusive as a rainbow.

That makes it especially hard for schools to cater to what in mathematics terms are outliers (at the far end of the Bell Curve). In the one room school houses that dotted the America frontier, the classroom was everyone from six or seven up to early teens with the older children instructing the younger as much as the teacher. If a student was not ‘getting it’ no big deal. The teacher worked as hard as possible to teach the basics…fundamental reading and addition and subtraction. The parents were simply advised that their son/daughter was not good at ‘book learning’ and they sought other options…farming, blacksmith, working on the railroads, sewing. There was a clear recognition that different people have different talents. They would have scoffed at the very idea of ‘standardized tests.’

A hundred years later when I went to school in America, we were segregated into streams (red, white and blue). One was for those who were what was then called…a bit slow. Another was for the ‘normal’ kids. The third was the ‘gifted and talented.’ We would be mixed in our homeroom for a portion of the day. All studying things like science and social studies as well as PE and lunch. But for reading and math our color was together. One teacher taught reading and another math. So while the reds were reading the whites were doing math. The problem with this system was that us kids were pretty smart (even the reds). We figured the whole game out…and as children will do it became fodder for bullying. ‘You’re in the dumb class.’

One good thing about the system though was flexibility. Without the focus upon ‘standardized’ and national curriculum, the teachers got to really know us children. For me, I had some mild form of dyslexia. No matter how hard I or the teachers tried…letters and words did not make sense to me. Sight reading, phonics…it made no difference. Then around ten it just magically clicked. Now we would say that my brain developed, new neural pathways formed. In the space of one grade I went from red (slow) to white (gifted). And I have never stopped reading or learning since…and never plan to.

Fast forward another quarter of a century to my special needs son and they now had ‘special ed’ classes. Unlike my red/slow group these children were deemed more severe and placed in smaller classrooms by themselves. Of course there might not be enough to have a class for every grade so they were grouped by similar age groups: first and second grade, fifth and sixth, that sort of thing. Of course, ideally these children were ‘mainstreamed’ as it was called for those classes that they could manage, i.e. PE and perhaps art or music. The problem was that they carried that label…’special ed.’ And being forced to rejoin the mainstream for such short periods of time really made the bullying even worse than it had been for me. And no one ever ‘graduated’ from special classes to ‘mainstream’ the way I had.

I will be candid here. I am not a person who believes in regrets but if I did…putting my son in school would be one. You see back then my ex-husband, the preacher, and I were homeschooling all four of our children. Like me the older two struggled to read, but when they got (at that magical ten)…watch out. But with this ‘special needs’ child, we just did not feel ‘qualified.’ So we put him into the local school (the others followed shortly afterwards…it was easier than homeschool). But he was always bullied…always the outsider. And I would say to him…I am so sorry. Ironically, the ‘experts’ never managed more than that one room school house could…third or fourth grade reading (about the level of a newspaper) and basic math. It was not a good trade…if I knew now what I know then. Oh wait I do and that is why I home educate his little sister.

Of course, we live across the pond now in the UK and things are different. Over here the options for parents with special needs children are different too. While you still have the term ‘mainstream’ it means something vastly different. If you choose to mainstream your child then they are with their peers for the whole day…well except maybe brief periods of one-on-one. For some children with more severe physical, intellectual or behavioral issues they may be given a ‘teaching assistant’ or one-to-one support to help them manage the classroom. And in the early years…with the right school, right teacher and a great teaching assistant (like my older daughter) then this can work surprisingly well for some children on the autistic spectrum.

But in all my years networking in the special needs community I have never once met a parent who felt that it was working for their older primary or especially secondary student. Let’s be honest…human beings are one of the most vicious animals out there. We are also cannibalistic at heart…we eat the weaker among us…just with bullying. And it is BAD! Broken ribs…suicidal…panic attacks…you name it and I have heard it.

Of course the other option in the UK are special schools. As opposed to the USA where that ‘special ed’ class may be exposed to bullying in the cafeteria or on the playground, in these schools everyone is the same…and different. We looked at the local one for autism for PanKwake, but the problem is…most of these children are at the more severe/non-verbal end of the spectrum. The schools are geared more towards teaching such basic things as picture card communication.

So for someone on the high-functioning end of the autistic spectrum you see the dilemma…mainstream with bullying or special school that may not be the right fit for their intellectual capacity. Honestly…what is a parent who wants more than just a place to dump their child so they can get a bit of rest, who demands not just good enough but the best possible education and future for their child to do?

Well…I’ll offer one possible solution to that one…tomorrow…