Sunday, January 18, 2015

The End of the Beginning

Last month marked an autism anniversary of sorts in that my twin daughters turned ten years old.  When they were born ten years ago I knew almost nothing about autism and the idea that my children could have it never even entered my mind.  Now, ten years later, I know more about autism that I ever wanted to know and it is front and center in my family's life.  Because all three of my daughters have autism it impacts every single facet of our lives from personal to professional to beyond.

I wouldn't give my children up for the world but if a cure for autism were discovered tomorrow I would gladly use it to cure my children of what is, for them, an extremely debilitating condition.  I know that isn't a popular sentiment in a community where people like Jerry Seinfeld are applauded for reading a book on autism and deciding to diagnose themselves with the condition.  But then again my children actually have the developmental disorder called autism and not some other random collection of perfectly normal and functional traits that the rest of the "autism community" have decided are a part of what they call "autism".

I entitled this post the end of the beginning because, with the twins turning ten, it sort of is the end of the first chapter of our lives with autism.  We spend the first ten years pushing them and their younger sister as hard as we could and trying every reasonable thing we could find to alter the course of their autism.  I firmly believe that what we did helped.

The twins went being completely cut off from the world to being at least partially connected.  They went from being completely unresponsive to speech and social interactions to having at least a rudimentary grasp of language and social situations.  They went from having tantrums several times a day and being unable to regulate themselves to having barely a tantrum a week and a much better ability to control themselves.

The youngest has also improved greatly but she is another story entirely.  She has always been more functional than her sisters but she is almost more limited by anxiety and hyperactivity.

But at the end of ten years I don't known whether we have managed to do enough.  I don't have any regrets about what we did or didn't do but it isn't clear whether we have been able to push them hard enough to achieve escape velocity from the deficits of autism.  All three are still extremely young but, as the gap between them and their peers grows larger each year, it is hard to ignore the fact that the odds are not in their favor.

So our focus has been slowly shifting to their future.  Suffice it to say that the future for children with autism isn't the best.  Our approach has always been to hope for the best but plan for the worst.  The best outcome is that they will be at least able to support and take care of themselves and the worst, well.  Lets just say that we will do everything we can for them as long as we can but we worry what will happen after we are no longer able to care for them.

Enough of the cheery stuff.  I can't predict the future any better than anyone else and there is no way of knowing how far they will progress in the next ten years.  After all, I hear that puberty is a blast in children with autism.

However, I do think that I am done writing here.  As you probably noticed my output has dropped over the past year to barely a trickle so I think it is time to call it a day.  But before I do I wanted to summarize (quickly, I promise) what I have been trying to say all these years -

1. Your children are your children, your children are not "autism". "Autism" is just a word used to describe a set of behaviors, it is not something they can be.  So love your children but feel free to hate "autism".

2. Not everything your children do is because of autism.  Autism may be pervasive developmental disorder that has an incredibly broad impact but it doesn't cause every problem behavior does not it grant every area of talent.  So if your child is good at something that is probably because they are good at it.  If they have issues it could be something other than autism causing them.

3. Autism is not "genetic", at least not in the way that most people mean when they say "genetic".  Genetic alterations do play a role in autism but autism is not solely (or even largely) controlled by our genes.  So ignore all of the breathless announcements about new discoveries about "autism genes" because it is not going to be that simple.  Autism (or more likely autisms) is going to look a lot like cancer when it comes to genes - there will be genes that increase risk but none that directly cause the condition.

3. Autism is an ongoing disruption of biological homeostasis.  Your body is an exceptional machine that works extremely hard to keep things in balance.  Autism, whatever it is, comes in and takes a sledgehammer to that carefully maintained balance and then keeps it out of balance.

4. Recovering from autism is a two step process.  First you have to try and find and correct the underlying biological issues that are preventing progress and causing problematic behaviors and then you have to teach the skills that were not learned normally.

5. The number of people with autism is growing at an extremely alarming rate.  You can argue about what factors are artificially inflating the numbers but at the end of the day you are still left with a substantial real increase.  The rate of this growth shows no signs of slowing down.  If you are not concerned about this then you are either not paying attention or are in denial.  Autism is not the only developmental disorder growing like this.

6. The online autism "community" is largely filled with asshats pushing their own ideology.  You can and should ignore most of them.  Don't focus on an ideology but instead find the bits and pieces that work for your family.

7. Organizations such as ASAN are top 1 percent of the autism world.  Yes, most of them have something that you might be able to call autism but it bares little resemblance to what the other 99 percent of people with autism look like.  Their slogan might be "its all about us" but they really have no clue about what life is like for the other 99 percent of people with autism.

8. Parents, you need to achieve peace with your children having autism.  You need to take time for yourselves and to find a way to relax and enjoy yourselves.  If all you  do is live and breathe autism 24 hours a day then you will burn out.

Take care and good luck.

Matthew Joseph

P.S. Why was it so very hard for everybody to understand that M.J. was initials and not a women's name?  I mean, really, if I had dollar for every time someone called me she...

8 comments:

  1. I always enjoyed reading your blog. Sorry to hear you're retiring. It's true the prognosis is not favorable for most people with autism. I know this from personal experience now that I will become the ripe old age of 60 in less than 8 months. Things did not turn out for me the way I'd hoped. I'm not blogging as much either but I still hope to crusade against the neurodiversity movement any way I can. I wish the best of luck to you in all your future endeavors and I hope for the best for your daughters.

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  2. Your words in the blog is very motivated and very inspiring, thanks for the kind words.
    I came across a blog simple woman who described how she coped with their child's autism. I read her post and it also greatly influenced me.

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  3. My name is David Ilgenfritz, and I am the founder of Citizens Threads Clothing Co.

    For the month of April our company wants to support Autism Awareness by donating a portion of our proceeds to a nonprofit doing impactful work for the Autistic Community. I have heard a lot of poor ratings for nonprofits like Autism Speaks and others, so I wanted to do my due diligence and seek out some help in choosing the correct charity. Any information anyone could provide would be greatly appreciated!

    visit us at www.citizensthreads.org/contact/ or email my personal email directly at david@citizensthreads.org

    Thanks!

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  4. I too am sorry to see that you are signing off. I appreciated your sensible, well informed commentary. I respect your choice but hope that you do offer the occasional comment on twitter if nothing else. I took the liberty of posting on my blog site a comment about your departure from blogging and quoted the 8 numbered points from this last comment. I hope that is OK but will edit the 8 points out if you wish. I just thought they were significant points that should be made and would not want to plagiarize you by posting them with different wording. Take care of yourself and your family.

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    Replies
    1. Hi Harold,

      Thanks for the kind words and it is perfectly ok to repost the 8 points. I may still tweet occasionally or comment on posts, only time will tell.

      Delete
  5. Your children are your children, your children are not "autism". "Autism" is just a word used to describe a set of behaviors, it is not something they can be. So love your children but feel free to hate "autism". That is so true. I always look forward in reading your blogs. I'm sad that you are signing off.

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  6. It's rare to find explanations like this that don't pathologise us.
    One of the most helpful FAQ on autism I've read,

    I will bookmark your site and check again here often. I’m quite sure :)

    Thanks
    Special Needs School

    ReplyDelete