Differences

I have been learning so much.  I have found so much hope and strength in learning.  Autism is not a disease.  It is not a sickness.  It is a difference in the way the brain develops at a very young, possibly pre-birth, age.  The pathways and connections in the brain don’t develop the same way in Autistics that they do in neurotypical people.  So I may have learned that when I make eye contact, it is a happy feeling and people smile and giggle.  Jake may have learned that a gentle pressure on his back is a happy and comfortable feeling.  Jake may have learned that too much noise is painful and that conversation moves too quickly, words can pile up like pancakes that have to be slowly taken apart to get down to the meaning.  I have learned that autism is not anxiety, it is not dietary problems or sleep problems.  Autism often results in behaviour that we don’t understand, in meltdowns, tears, or stimming behaviours (self-stimulating behaviours, such as excessive scratching or spinning objects).  However, these are also not a disease.  They are simply communication that we don’t understand.  A different language.

A difference in his brain.

A difference.

A different language?  A different understanding?  A different experience?

A disability?  Maybe.

A different ability.

Not a disease. Ok.  So then, is there a cure?  Is there a recovery?

Can there be a cure for something that is not an illness?  No.  No cure.

Can there be a recovery from how your mind works?

I have read amazing stories of non-verbal Autistics who learn to use communication devices, or even learn to speak.  I have read incredible stories of people who struggled socially and grew to hold careers and marriages and families.  I have read of Autistics who become great at eye-contact, who love sarcasm, jokes, and being with people.  Is this recovery?

Is it recovery if no one can tell that you are Autistic?

Is assimilation and becoming like everyone else the goal?

No.

The goal is Jake’s happiness.  The goal is lessening Jake’s anxiety.  The goal is helping Jake develop friendships that he values and that value him.  The goal is Jake feeling loved, accepted, fearfully and wonderfully made.  The goal is for Jake to be able to function in society at the best of his ability, enjoying his role in that society.  I don’t really care if people think he’s quirky, different, sensitive, or Autistic.  I just want him to know that he is incredible and that he can handle it.

He needs to be able to handle life and know in his heart that he can.  Confidence.  Confidence is a goal.

To these ends, supports are great.  If he learns more skills from his therapy sessions and can apply them to his encounters with others, that is wonderful.  If he needs technology to help him articulate his ideas or help him focus in a busy environment, let’s do it.  If I need to talk to his class in a few years and explain that high fives can be painful, I can do that.  If he wants me to stay out of it because he knows what he needs to do, then I am blessed.  If a special diet and tons of extra omega-3 help, then that’s what we are having.  Anything I can do to make life easier for him, I will.

When we first got into this, I actually asked our service provider if she had ever seen someone be cured from their autism.  Bless her, she was gentle with me.  She must have had great faith that I would learn.  She told me no. Some people do find that they are able to work with people and within society. Their autism becomes almost invisible and does not affect anything.  But it is there.  It is how their brains are working!  Autistic people work hard to find ways to communicate, to work with the rest of us who take social interactions for granted.  But that does not mean that it isn’t harder in a room with background noise.  That doesn’t mean that it might be harder in the bright sunlight, or when there are too many colours decorating the classroom.

Would I want to change Jake?  Take away this difference?  This autism?

I would want to take away his fear.  I would want to take away his anxiety.  His sleep problems.  His tummy aches.  His sensitivity to light.  His sensitivity to noise.  I pray for him.  I pray for meaningful friendships for him.  I sometimes would like to be able to talk to someone else in the house and not be interrupted.

But I would never change Jake’s brain.

This is who he is.

I will work with him to encourage his passions.  If that means that he grows up to collect Star Wars Lego, well, he won’t be the first adult with toys.  More likely he will be an environmental scientist or animal protector.  If he wants to talk all day about his special interests, then I will help him become a teacher.

Who he is has nothing to do with anxiety, dietary or sleep problems.  Those things have recovery, cures.

Autism does not.  It is not a negative.  It is a positive.  It helps him focus intently.  It gives him amazing skills of observation and memorization.  His long term memory is incredible.  He is a super-empathetic person who cares greatly about others and about animals.  He is creative, methodical, and very good at patterns.  These are the blessings of a brain that works just the way Jake needs.

I have worked through these ideas a lot over the past few months.  I really believe in them.  The reason that they are so important is because I really value Jake.  I mean, I REALLY value him.  If there had been an option, as there is for Down’s Syndrome, to determine genetically before he was born that he would have autism, I would not have cared.  I care about him.  Autism is a beautiful, complicated, and at times difficult part of him.  But I want the whole package.

The following is from the Autism Speaks Canada Mission Statement:

We are dedicated to funding global research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

http://www.autismspeaks.ca/about-us/mission/

There is a problem here.  I am hesitant and cautious about these goals.  The causes and prevention of autism?  The cure for autism?  If they find that eating sugar or something like that causes autism, and that by skipping it we could prevent autism, that would be interesting.  Would I do that?  Probably.  If they find a genetic marker for autism?  Would I stop a pregnancy that was likely to produce a child like Jake?  Never.  And this is the problem.  Research is pointing to genetics along with environmental factors.  I don’t believe there can be a cure for something that is not a disease.  I don’t believe that preventing children who have the potential to possibly be autistic from being born is remotely ethical or desirable.  I don’t even know if disorder is the right word.  It’s so negative.  Yes, there are negatives, but doesn’t everyone have things about themselves that they would change?  I will stick with difference.  Differences need to be accepted, to be appreciated, and understood.

And so I don’t agree with the mission of Autism Speaks.  I can’t agree with this mission statement.  My son doesn’t need to be cured or prevented.  He needs to be loved, respected, and cherished as he is.

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4 thoughts on “Differences

  1. I do not know quite why I felt like searching the web today for blogs of parents of autistic kids. My son Thomas was diagnosed June of last year and it took a while for early intervention programs to kick in and for me to accept some things about him… a mourning process of sorts. Now I find myself reading your words and relating to all of it. It gives me warmth and finally courage to say what I think and courage to share is huge. So, thank you.

    Thomas is high functioning and the happiest kid I ever met. He is smiling all the time and he wants to please his parents so much… His empathy for others leaves me speechless at times. He is 4 and 6 months. He is not in school yet and we are doing everything we can possibly do with early intervention to get him ready and we can see him developing a lot. I was always worried that whatever behaviour therapy we would “choose” to put him through would change him too much and I am happy that this hasn’t been the case. I love the way he laughs with his whole body and the emotions are so raw and honest… they show so much of him, I choose to believe he has super powers. I also choose to believe he is indeed different, unique. And it is up to me and my husband to learn ways to teach him and not the other way around.

    I do not agree with finding a cure. I know it is not a completely black and white issue, but I cannot imagine not having Thomas the way he is. I get upset when I see the government funding autism speaks. And I get upset when I see foundations getting tons of research money with no actual autism perspective on their boards.

    When Thomas got diagnosed, I needed to know everything about what autism is and isn’t. The best advice came from autistic kids. In their words I found myself getting stronger and more knowledgeable about how I could help Thomas develop.

    We now have a team of very caring people that is helping us to learn how he learns and the past 6 months have been amazing. I am not saying that there are no struggles but we just keep on learning and that is the key for me.

    So thanks once again for sharing.
    I learnt something new today and that feels amazing.
    AN

    Liked by 1 person

  2. Thank you so much for your comment and for sharing with me. I am so thrilled and encouraged by your journey. I completely agree with you — to keep on learning is the key. I can’t tell you how much your words mean to me! You are a light and that is what we all need.

    Like

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