We’re on the same team….right?

      38 Comments on We’re on the same team….right?


 

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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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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Bambi VanWoert on Facebook
Guest

by far the best article you have written. My son is also very HF and was originally diagnosed as an Aspie; now is diagnosed HF ASD. However, I feel lik an outcast sometimes even within my own community because he is so aggressive and emotionally young that people don’t get it. If he didn’t talk, they would respond to him differently, but because he can…….they think he should be able to respond appropriately even when they KNOW he is ASD. I love your blog. Keep it up!!!!

Viki Duvall on Facebook
Guest

I love reading your posts. I have used both my son has autism, and my son is autistic. He was diagnosed as high-functioning autistic when he was five. He is now eight. We knew at two that there were issues, but the doctor told us not to worry. This is what delayed our diagnosis. He used to have daily major meltdowns before diagnosis. Once we learned what the issue was, we completely changed our parenting style. It is, as I know you are all too aware, a difficult road. Not just for our children, but for us as parents too.… Read more »

Stacy Harty on Facebook
Guest

So very true!
Keep up the brilliant writting, you’re doing more good than harm. Forget the haters.

Lost and Tired on Facebook
Guest

Thanks everyone….

Stuart Duncan
Guest

Unfortunately, the more you put yourself out there, the more likely you are to find people who will be offended by what you say, people who are easily offended, people who like to argue and so on. It's the price you pay for reaching a lot of people. I realized early on that I can either try to please everyone and keep disappointing yourself or you take the disagreements, arguments, snide comments and hateful attacks with a grain of salt and just keep going. Just yesterday I had a woman with autism attack me for "othering" because I wrote about… Read more »

Rob Gorski
Admin

Well put Stuart. I guess my point was that it's happening in general, I was using myself as an example. This is happening to lots of people and it's something that truly baffles me. I don't understand the motivation behind these attacks.

But your right. We will encounter these people along our way. They are just counter productive and I find that frustrating. Especially since we should all be on the same team.

Richard Ludwig
Guest

i have the exact same issue – to me – people who DO NOT have autism have absolutely NO RIGHT to OPEN THEIR MOUTH because they do not have it themselves – and do not know crap about what it is like to have the condition, the social rejection of it, and so much more that it makes my head spin. i have the exact same issue with people who go to college to teach special needs / special ed when they ARE NOT special needs themselves !!!

Ann Marie Hake Hughes
Guest

But there are people WITH autism who open their mouths because they are on a different SPOT on the spectrum. They are offended because I want my son 'cured' and for some stupid reason that means I hate him, don't love and accept him. The people who do not have autism are actually nicer to us.

Stuart Duncan
Guest

lol, I can't even begin to count the number of ways that is so wrong.

Marcia Clodfelter Cross
Guest

Richard, I would so appreciate your insight. I knew there was something different, not bad, just different about my grandson when he was two months old. Despite all assurances to the contrary, we pushed ahead with determination to work with him and offer him the opportunity to learn in the way in which he actually learns. We have not tried to cure him or change who he is. I heard a speaker who had autism himself who said how insulting it was to him when people assumed he would choose to be different. I love my grandson the way he… Read more »

Rob Gorski
Admin

I didn't see a Richard, so I'm assuming you are asking me. If not I'm sorry. I'm not exactly sure what you are asking. You have a lot to say and I think that's awesome because it shows me that you are plugged into your grandsons life. What you were describing sounds so much like my wife. After the kids were all diagnosed, my wife realized that she has always experienced the same or similar things as our kids do. Lizze was later diagnosed with Aspergers herself. Please feel free to email me whenever you need to. I think you… Read more »

katscafe
Guest
katscafe

Another great post Rob. As you know, I just entered into a verbal sparring match and you not so long ago held my hand when I encountered my first official meanie, and I can ALWAYS count on you to tell it like it is. The honesty you have is an inspiring reason why I felt I could blog about being a special needs mom myself – not because I'm an expert about more than my own children, but because I AM an expert in my own kids and I care about raising awareness for those who don't understand. I think… Read more »

Alicia
Guest

I come from Stuart Duncan blog, I have Autism and I see nothing wrong with parents talking about Autism in a respectful way to those that are Autistic, of course there is a difference in talking about Autism and talking for the Autistic by denying the voice of the Autistics (verbal or not), it's not what I normaly encounter, but there are some cases of non-autistics attacking Autistics that are trying to have a voice of their own, like I said it's rare but it happens, even blog posts used just to bully an Autistic person I have read, that… Read more »

Rob Gorski
Admin

Alicia, That was very well said. I don't think that would offend anyone, certainly not me. I completely agree with you, it has to kinda be, to each their own thing I suppose. Look, at the end of the day we are all just people. We all see things in our own unique way and experience the world differently. Everyone should feel loved and accepted…..period. You mentioned curing Autism. I will say that as a parent, it's very hard not to want to take away anything that causes your child to struggle in life. I totally get why some people… Read more »

Marcia Clodfelter Cross
Guest

I love the "abridged versions of themselves!" It makes great sense. Thank you so much for your careful consideration of this important aspect of the struggle, as well as your entire body of work devoted to what is so important to so many of us. Keep up the good work!

Rob Gorski
Admin

Thanks. To me it makes sense and is how I have been describing Autism to people who don't understand.

Marcia Clodfelter Cross
Guest

Alicia, I am so glad to find another grown person with autism I can learn from! I so agree with your point of being listened to first. Please share with those of us who are caregivers of children with autism. I am so glad to hear you feel it doesn't take away from your experience and special understanding, for others, parents and instructors, to also desire to be supported and instructed as well as to facilitate better opportunities for the children whom they love.

Shannon Rosa
Guest

Constructive conversation is possible, but it's hard work, and requires listening to people who criticize us rather than lashing out at them defensively. So, it's more about considering whether a specific grievance has merit. In those cases, we need to be very careful to speak for ourselves and our personal experience only. It doesn't matter how much we know about being a parent or a self advocate (for those of us who fall into one category only), if the issue is that we don't understand what it's like to be on the other side. We're working hard at constructive conversations… Read more »

Rob Gorski
Admin

Wow. Thanks for stopping by. I completely agree with you. I realize this isn't always easy to pull off but this is so vital to the future. I'm very open minded and I can see others point or perspective but I don't understand the aggression. We should all be working together towards our common goal.

Thanks again. You made some great points. I swing by and check out your new series. Thinking Person's Guide to Autism is a great site and you folks are doing great work. Thanks for everything you do to better the community.

imawestie
Guest
imawestie

I think it's already been said and I'm just repeating it because it's true:
You've copped some flack? Great that means people are reading!

At first I thought there was a problem with you having written something on behalf of "all" people with Autism. But nope, you've done a great job of saying it's what your children wish we all knew.

My children just wish that other people truely knew manners and acceptance.

ps, I'm here thanks to plus.google.com …

Julie Coryell
Guest

I recently wrote in one of my posts how divided the autism community is and what a sad realization that was to come to. The argument over whether our children are "autistic" or are "children with autism" has gotten ridiculous. It just doesn't matter to me. I personally feel that when we argue about those types of details that we are taking our eye off the ball. I'm more concerned with those people who are not a part of the autism community being more accepting of our children and teaching their children to be more accepting of those with special… Read more »

ruby rada
Guest
ruby rada

im so happy that i found this site,sad to say here in my country they are not yet aware about this issue…but since i found this im so confident now that i can be strong enough to handle my son..internet for me is a big help…i admit im really left behind when it comes to information..we just had 1 chance for his check up that was the time i found out he is asd…..

Julie Coryell
Guest

Fabulous post! At one point while I was reading this I thought "I think this guy has been inside my head and put it all down on paper". I'm newer to the blogging community as I put off sharing our journey outside of those we had personally come in contact with (or were referred to us) for fear of the judgement you describe. What has annoyed me has been the "you're a new blogger so you must be new to autism" comments I have gotten from several bloggers. That drives me CRAZY! I am NOT new to autism (as my… Read more »

Rob Gorski
Admin

Welcome to the blogging community. It does get kind of click anymore but I stay away from that because it defeats the purpose of reaching out in the first place. You are always welcome here.. 🙂

Julie Coryell
Guest

Our daughter will be 13 next month and although she functions at a higher level than many we have come in contact with she still has emotional meltdowns typical of a 6 or 7 year old so I can totally relate to you on that. These meltdowns are unfortunately becoming more frequent due to the joys of hormones/puberty. My hope is that I can document our journey & it might help others as they encounter this step years from now. What I have learned in the short amount of time that I've been blogging is that I definitely won't make… Read more »

Alexia Herbowy Conrad
Guest

Rob, your "10 things" post was one I shared on my FB page. It mirrored what we are going through with our son Theodore….I even added my own comment ("Even though I don't speak (yet) my actions speak louder than I ever can…I show love and appreciation in my own way… and I'm a great judge of character."). When my son was diagnosed we were flooded with a mind-numbing amount of information that was less than positive. We were sent to visit websites that painted a bleak future for my son, and for us. So once we got our heads… Read more »

Foxxy
Guest

Rob, great post! I think that a lot of people are of the "it's my way or the highway" mindset. There's stay at home moms vs. work outside the home moms. My special needs are more important than your special needs. My autism is better than your autism, etc. Listening to another person's perspective on something that you hold near and dear and "know better than anyone else" is a very uncomfortable thing for a lot of people so when you shake their tree, they're gonna fight you on it. As far as talking about explaining your child's behavior and… Read more »

Rob Gorski
Admin

Very, very well said. Thank you

anita
Guest

In our "community" you are dealing with exhausted, isolated, worried, frustrated, grief-stricken and very sensitive people. While I wish people would chose not to comment with criticism – constructive or not – it is the nature of humanity. You simply cannot please everyone. Focus on the many heartfelt and positive comments you received in response to your post and allow the few negative comments to remain "the few". I would suggest you do not give negativity a voice by rebutting or clarifying your words. They were powerful and helpful to many and a means of support to those who need… Read more »

anonymous
Guest
anonymous

as usual, straight and to the point, Rob. my perception of the problem is the same as yours, and i think it's interesting that so many, so many parents feel so grievously criticized; i believe that indicates that, intentional or not, there is a problem w the message being sent to us. adults who are able to speak for themselves simply don't have the same needs as children. i think a huge part of the problem w this dialogue is the differences in the lives of adults and children. many critics lump these lives together, mistakenly. the fact of the… Read more »

anita
Guest

In our "community" you are dealing with exhausted, isolated, worried, frustrated, grief-stricken and very sensitive people. While I wish people would chose not to comment with criticism – constructive or not – it is the nature of humanity. You simply cannot please everyone. Focus on the many heartfelt and positive comments you received in response to your post and allow the few negative comments to remain "the few". I would suggest you do not give negativity a voice by rebutting or clarifying your words. They were powerful and helpful to many and a means of support to those who need… Read more »

Ashlie
Guest

I am new to your blog and I saw this pop up. Can I just say I have only been in the ASD community for about 3 months or so. Our two oldest toddlers were both diagnosed 6 months ago. I feel the same way! I've had people stop reading my blog once they realized I am LDS (Mormon) and my last post struck a nerve with some (http://autismspuzzle.blogspot.com/2012/01/i-would-change-my-child.html). I don't understand the offense either about the wording but I try to be careful about it because I know it offends others. However being a young mother with 2 toddlers… Read more »

violetsinspring
Guest
violetsinspring

hear hear – well said! Hope you continue writing about your experiences and it might encourage others to write about theirs rather then pick yours apart. Yes we should be on the same team……. 🙂

HeatherESedlock
Guest
HeatherESedlock

 @ashlie  I also attend an LDS church and I"ll be sure to check out your blog.  But I wanted to welcome you to connect with me on Facebook. I'm 35, autistic, and have two autistic boys (they have other issues too…. but ya know, we're here about their autism 🙂 )I"ll be signing in as my Facebook account, so you should be able to just click on my name and it will take you to my Facebook wall and you can do a friend request from there…But one point I wanted to mention was this: I say I'm autistic, not… Read more »

HeatherESedlock
Guest
HeatherESedlock

We do have to be careful to preface nearly everything we say with "This is how MY autism is…"  Let's face it, we all deal in generalities and stereotypes. I'll clarify for the un-knowledgeable (some people just don't know the difference and that's okay cause I"m about to edify it for you!).  Generalities is what is true for a MAJORITY of a population. It doesn't even have to be true about MOST of a population. A stereotype is what is said to be true of ALL of a population, but which isn't. For instance: Generalities: A lot of redheads have freckles. (This… Read more »

Kim
Guest
Kim

I see this is an older post, but it's a repost today and the first time I've read it, so I'm going to reply. First, you amaze me-I read you regularly and I am always astounded that you manage to get up every day and get it done. I don't know if I could do as much in your shoes. I'm a medic as well, with an autistic son, and I feel so badly for Lizzie and her migraine. I'm on day 17 of an awful one, I don't think I'd survive one that lasted over a year. Second….as to… Read more »

Suburp
Guest
Angela McDonough
Guest
Angela McDonough

The way it was explained to me is Autistic isnt the actual dx PDD is the dx Autistic or Autism are a cumulation of those symptoms that make up the dx I questioned that because it says in his medical records recovered from Autistic features at age 6 because that is when he started responding to the world around him