Aren’t we on the same team?

I’m not infallible but I am experienced

I wrote a post called 10 Things My Autistic Kids Wished You Knew. This was written about my children, although many, many people have been able to relate to the words. As with the rest of my blog, I never pretend to speak for anyone else. I simply share my family’s story, in a very open and honest way. I will say that our experience may not be unique as my words often ring true for others as well.

I’m certainly not infallible but I do speak from a great deal of experience. I have been a special needs parent for almost 11 years now and that journey has been and will continue to be quite challenging. My wife and I are raising 3 boys, all in different places all across the Autism Spectrum.

My oldest, Gavin, is 11 years old, very, very complex and can be very challenging to walk along with on his journey through life. He struggles with Aspergers, schizoaffective disorder, ADHD, OCD, PICA, an unknown degenerative neurological disease and primary immunodeficiency. These is just some of his challenges and not a complete list by any means. He is also emotionally about 3 or 4 years of age.

My middle child, Elliott, is 5 years old and has Aspergers but is very, very high functioning. He is not socially awkward but experiences anxiety. He is by far our most typical child.

Emmett is our youngest at 3 years of age. He was diagnosed with Autism earlier this year. He is pre-verbal and struggles with severe speech and language delays. Emmett also has Marshall’s Syndrome and recently had surgery to have his tonsils and adenoids removed. Emmett can be very difficult to walk along with as well.

While I’m far from the brightest bulb in the box, I have gone great lengths to educate myself on what my children are dealing with.

I find this frustrating 

One of the most frustrating things I have encountered along the way has been people within the Autism and special needs community itself. I have personally been attacked for saying things like, my children are Autistic instead of I have 3 children with Autism. It inspired me to write Climb off your high horse already. I don’t understand what motivates this type of
verbal aggression.

To make things even worse, the verbal attacks come from people within the Autism and special needs community. Last time I checked, we were on the same side….at least I thought we were.

More recently, a few people decided to pick apart my post, 10 Things My Autistic Kids Wished You Knew.

One line in particular seems to have struck a nerve in some.

1. I’m sorry I have fits but I’m not a spoiled brat. I’m just so much younger on the inside than I am on the outside.

Keep in mind that I was writing this about my kids. I wanted to help put into context some of the behavioral issues my kids present with, especially my oldest. My thinking was that if people could have different perspective than maybe they could be a bit more understanding. However, apparently this line was deemed offensive by some. It’s a fact that some children with Autism are emotionally younger than their chronological age would lead you to believe.

 

My son Gavin is a perfect example. He is 11 going on 12 years of age but is emotionally about 3 or 4 years old. This is a very unique challenge because Gavin will often times respond as though he were 3 or 4 year old toddler when he gets angry, frustrated, scared, happy or sad. I know this to be true for many other families out there as I have been contacted by many parents saying they experience the very same issues with their ASD child.

Does this mean that every ASD child or adult will be dealing with the same age gap? Absolutely not… Autism is a spectrum disorder and by its very nature means that every person with Autism can and will experience different symptoms and/or challenges.

The National Institute of Health defines the spectrum part of Autism Spectrum Disorder as:

Different people with autism can have very different symptoms.  Health care providers think of autism as a “spectrum” disorder, a group of disorders with similar features.  One person may have mild symptoms, while another may have serious symptoms.  But they both have an autism spectrum disorder.

Those that were offended by the above mentioned line, less than politely accused me of spreading misinformation and insulting those with Autism. I don’t understand where this is all coming from. I thought I was helping the average person to better understand my children’s behavior by framing it in a way that was easier to understand. At no point was my goal to insult anyone or spread misinformation.

The fact is that we as a community are presenting a united front. We are not working together to spread accurate Autism Awareness and this needs to stop if we want things to get better.

What’s wrong and how can we fix it?

I really think that it comes down to intolerance and a lack of understanding from members of the Autism community. If anyone should be supportive of a family raising a child or children on the spectrum it should be other families from within that same community…right? One would think that we would want to show support for our fellow special needs parents, however, in many cases, that just not happening.

We all want the general public to be more understanding and accepting of our children and yet everyday I see just how intolerant we can be to each other. How is the general public ever suppose to become more Autism Aware if we as member of the Autism community won’t lead by example. I feel like at times we are simply making things worse instead of making things better.

Trying to navigate the special needs community anymore is like walking through a mine field. You can say or do anything without offending someone.

If I choose to use the word Autistic instead of person with Autism to describe my own children, I’m accused of cruelty or disrespecting them. Really? If I share some of the the things that my family experiences with Autism, I’m accused of insulting the Autism community and spreading misinformation. Are you serious?

People, we have to move past this stuff. Why do we care so much about terminology and the words used to describe a situation or condition?

News flash for everyone, whether you like it or not, Autism is a disorder. Whether you choose to say your child is Autistic or your child has Autism shouldn’t matter because it doesn’t change a damn thing. Life will be just as easy or just as difficult regardless of the choice of words.

Why are we uncomfortable being honest about our experience? Why are we so easily offended?

If we want the world to be a better place for our kids, and I’m going out on a limb and saying that we do, than we need to make changes much closer to home. We need to understand and accept that Autism is profoundly dynamic. This means that every person with Autism and subsequently their families can have a profoundly unique experience. There is nothing in Autism that is a one size fits all. Every child, adult and family can be different.

We are making way to many assumptions about other peoples experience based on our own personal experience.  My family’s struggle with Autism is particularly challenging. However, I am very aware that many families out there face challenges much more difficult than mine. I also know that some families experiences are much more positive.

The fact that everyone’s experience can be unique is a concept that seems to be evading the grasp of many people within the community.

I always fall back to the same thing when it comes to addressing these issues. I think that by sharing our stories not only are we helping to educate the public but also ourselves. We shouldn’t have to navigate a minefield to have a conversation about Autism. Just because you prefer Autism over Autistic doesn’t mean you have the right to lash out at those who choose differently. At the end of the day it means the same thing and neither term should be deemed offensive.

If you hear someone sharing an Autism related experience that you have personally never experienced doesn’t mean they are wrong. It means they have had a different experience than you. The best thing to do is take advantage of their willingness to share and learn more about Autism than you knew already.

I would like to think that we can turn this around and learn to work together instead of fighting amongst ourselves. We need to set the standard and lead by example, instead of being another example of the intolerance and ignorance we are working so hard to counter.

 

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Rob Gorski
Father to 3 boys with #Autism, 1 with Fragile Health. Award winning blogger, techy and advocate. #AutismDad @GuardianLocate
Rob Gorski

Rob Gorski

Father to 3 boys with #Autism, 1 with Fragile Health. Award winning blogger, techy and advocate. #AutismDad @GuardianLocate

0 thoughts on “Aren’t we on the same team?

  • October 18, 2011 at 9:04 pm
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    Bravo!  I’m with you all the way on this.  We all have our struggles… some worse than others.  We should be cheering each other on, celebrating our childrens’ successes — and struggles — together, and sharing words of encouragement and support.  There’s way too much negativity out there already.  Parents of children with autism (or autistic children — however you want to say it!) face enough struggles already without tearing each other down.  

    Reply
  • October 13, 2011 at 5:22 pm
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    I read that post and agreed with it. That’s exactly where our family is too. I understand what you’re saying though, about how we pick at one another. Recently another person with a child on the spectrum posted an idiotic entry that said parents who don’t wish to add another autistic child to their family don’t love or accept their children enough. Admittedly, that set me off. We do need to be kinder to one another and remember that regardless of our children’s individual issues and behaviors, we really all are part of the same community.

    Reply

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