Monday, 19 October 2015

What I learned in grade school

People often seem to look back at their grade school years as a time of carefree childhood joys and a lack of responsibilities and woes. Like that book "All I Really Need to Know I Learned in Kindergarten" (Robert Fulghum), we think of it as a time of simple rules and simple moral lessons.

My memories of grade school aren't like that.

I was bullied. I was abused. I hated myself. I felt guilty, afraid and worthless.

I didn't believe that the future would be any different.
I would never have believed anyone who told me it would get better.

If I could somehow transmit to that kid the wisdom of forty-some years of life lessons, stuff that really mattered,  it would look something like this.

  1. Bullying isn't about you, and nothing you can or should change about yourself will stop a bully from doing what they do. You are bullied in grade school, you will be bullied in middle school and high school, and right into adulthood. The only measure that will help is to get away from wherever you are being bullied, and the bullies themselves.  You will find safe places and people, and hopefully you can avoid the worst of the abuse by getting out of the target range. Most of the time the damage it causes won't be bruises or scrapes, but inside, where you can't "prove" you are damaged. Telling adults won't help most of the time, because adults don't know how to handle it either. This isn't fair, but it is true. Try to find adults who will help to separate you from the bully, or remove you from the situation. It isn't your fault. You are not defective or wrong. People will not always like you, but they have no excuse for bullying you. 
  2. Sexual abuse isn't about you either. It is not your fault. None of it.You didn't ask for it. You don't deserve it.  No matter how old you were, how you felt about what was done to and with you, how you acted or didn't act, it is not your fault.
  3. You aren't going to be good at everything you want to be good at. Don't let it stop you from enjoying what you do. Don't let the expectations of your parents or friends define your worth. If no one is paying you to do it, you answer only to yourself. 
  4. No matter who says "you can be anything and do anything you set your mind to", there will be things you can't do. Don't hate yourself for trying hard, but not making the cut. Don't hate yourself when you realize you can't do what you wanted to. That kind of thinking leads to believing you are a failure, because you have failed. You will find you are good at some things that you hate doing, and bad at some things that you love doing. You will find things you can and want to do. Work at those. Play with the others. Take what joy and learning you can from everything you do, even if you suck at it.
  5. You will never be better than everyone else at something. There is always someone better, and there is always someone who will lord it over you.You will find that being in the top 10 when you didn't have to work for it will never give you the satisfaction that being in the top 25 at something you have to try your hardest to get good at will give you. How you compare to others really isn't important. 
  6. Try to set goals that you can control, not to be better than everyone, but to get better than you were. Don't let anyone tell you that you should give up because you will never be the best. If you are as good as you can get, and better the more you work at it, then you have accomplished something. If you take joy in what you can do, what you can't won't matter so much. 
  7. Find work that you like, but don't worry if you don't love it. Not everyone can make a living at what they are truly passionate about. That said, don't settle for work that you hate, just because it pays well. Don't let your job define your character, or your wage define your worth. If you do manage to make enough at something you love, count yourself lucky. 
  8. Nothing good lasts forever. Enjoy the moment, let go of it, keep the memory. Nothing bad lasts forever. Learn what you can, then let it go too. Time moves, things change. Don't focus on the reward, or dread the punishment. Live through it. Move on. Don't focus on the past either. Learn, but don't let it control you. You make mistakes. You do amazing things. Neither is a reason to stop enjoying and working at what you do.
  9. You can't make the past go away. Trying to pretend it never happened is not helpful. Denying the pain is denying yourself any way of easing it. You can't find help without admitting you are hurt. 
  10. The damage that has been done to you is not your fault, but no one can help you until you are ready to work at repairing the damage. Really. If you need to set blame, go ahead, but blame won't really help you heal. Forgiving the bullies and abusers isn't necessary either. Make them unimportant, take away their power to harm you. Accept that terrible things have happened to you, and it isn't your fault, but the burden is on you to seek out and to accept the help you need. It isn't fair. It just is what it is.
  11. Take your share. Enjoy your accomplishments. Being humble is good, but being self-depreciating is a bad habit. Take credit when it is due. Take sincere compliments gracefully, even if you have trouble believing them. You  are worthy. You are deserving. You matter. 
  12. It really will get better.  It will never be perfect, but it will be better. 
  13. You will find people who don't want to change you, but will love and accept and even admire you for who you are. They won't care if you are awkward or uneasy. This is your tribe. They will be few and precious, so hold on to them. Some will be easy to find, and some will take a little time to recognize as kindred spirits. They will, in time, be closer to you than family. 
I know these things, but have trouble living them. I ache for the child I was. I fear for the pain my children will inevitably feel.
I'm still a work in progress.  I wish life was fair, but I know it isn't. I can't change that. What I can do, hopefully, is heal. Be an example to my kids. Try to show that my scars are not what defines me, but are a part of me just the same. That I have nothing to be ashamed of. 

Friday, 9 October 2015

Purposeless Functioning Levels

Several times recently, people who are not directly connected with autism have asked me about "functioning" as a term to describe how severe a child's autism is. One was about how "high functioning" Monkey was, compared to Kitten. One was to ask if another child on Monkey's school bus was "lower functioning" than Monkey, because the kid had noise cancelling headphones on the bus, and some more obvious odd behaviours when he was picked up by his mum. The third was from a teacher who has not taught any autistic kids before, about what level of "functioning" an autistic child had to have before they could be integrated into a mainstream classroom, as Monkey is.

I don't like the terms "low functioning" or "high functioning" in relation to autism. For one, it is hard to quantify a meaningful measure when the spectrum has broad as well as deep criteria for diagnosis. Is a child who is friendly and interacts well with adults,  has poor or no language capability, many sensory sensitivities that limit ability to be in high stimulus environments, and can also draw or paint exceptionally well, "high" or "low" functioning? How about a child who communicates with language, is very good at academic work, but has significant problems with social situations, can't write with regular writing implements or play any kind of sports due to apraxia, and has constant and noticeable stims?

When people use this measure, you can see that they want to sort children into "boxes" to make thinking about them easier and less complicated. At best, they see "functioning" as a sort of range of values from 0, unable to function within society at all without assistance, to 100, virtually indistinguishable from "average".

The worst part of these terms as they are used isn't just the assumption of a single measure to apply to a whole range of symptoms, behaviours, and sensory processing disorders. It is the whole concept of "functioning".

Because what people seem to mean by "functioning" is "how well does this child meet our expectations of normal?" and "how well does this child fit in with peers?", which boils down to "How well can this child hide the differences that autism creates, and fake being normal?"

My kids are whole beings. Kitten is more at ease socially, but has little practical language. Monkey has come past being non-verbal, but has a significant speech impediment, and suffers socially. Kitten has more frequent and easily recognized stims, but Monkey has more disruptive stims that are often misunderstood to be deliberately annoying behaviours. Kitten has more violent behaviours towards herself and others, Monkey has crippling anxiety and low self-worth. Some of these things are going to be "treatable" and certainly some of them will change over time. Does a child with "high functioning" autism who later exhibits more unusual and socially awkward behaviours become "low functioning"? Does a child with "low functioning" autism who learns to effectively use language suddenly become "higher functioning"? Autism is a part of brain function, it doesn't go away just because the child learns and grows.

Are we really more interested in how a child manages to pass for "normal" than how to help them find their own ways to adapt and thrive, and to find their own place in society as their own authentic autistic self?