#Autism: Assumption is a dirty word

I had a really good discussion today on Facebook of all places. I had asked the question, “Do you miss your life before #autism?”

I was kinda surprised by the mixed reaction that drew from the community.

There were some people that almost seemed to take offense to the question. Like how dare I ask if they miss their old life.

On the other hand, there were people that responded saying that they absolutely miss their old life at times.

The discussion got somewhat heated because someone made the comment that you have to want to see the positive and that they aren’t a part of the pity party autism support groups.

Personally, I was really caught off guard by how this question was taken, at least by some.

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However, it was very clear that there was a divide between what seems like two different segments of the autism community. That makes me sad.

I don’t know why we can’t all be on the same page? I mean, aren’t we all part of the same community? Aren’t we on the same team? It sure doesn’t seem like it, at least from this writers perspective.

If I may be so bold, I’d like to point out what I see as at least part of the problem.

I’ve actually written about this a few times and feel quite strongly about it.

We preach, eat, sleep and breathe autism awareness. We have a special month dedicated to awareness. We even have a day that the whole world has dedicated to autism awareness. There are countless organizations, groups, blogs and advocates, dedicated to you guessed it, autism awareness.

If this is the case, then why is there still so much in fighting?

We demand understanding and acceptance from the public, but the very first time we have a difference of opinion, we’re at each others throats.

Perhaps, it would serve us well to practice what we preach.

A really good place to start is to recognize the fact that we are all individuals and as such, we all experience things in a different way. Add to that the fact that autism is a profoundly dynamic condition and you have the perfect conditions for everyones experience to be different.

I don’t understand how we of all people seem to forget this very basic autism fact.

We forget that just because we experience autism one way doesn’t mean that the next person is having the same experience.

For example, some situations are more challenging than others. I’ve personally lived both sides of the coin. My 3 boys are all in very different places on the spectrum. While they are each wonderfully amazing in their own right, they are not without their individual challenges.

Let’s say that there are two families. Both families have a child with Aspergers. Since both kids have the same disorder, does that mean both families are having the same experience? Absolutely not!

Family “A” may be struggling because their aspie won’t wear clothes and runs around naked. This child may have some significant sensory issues that makes things like getting them to eat or wear clothes very challenging. This child probably needs extra help and guidance while at school or a special needs classroom all together.

Family “B” has a child with the very same diagnosis but vastly different symptoms. Their child doesn’t have the same issues with sensory processing and so wearing clothes and eating a variety of foods is not a problem.  This child is also mainstreamed and doing well in a typical classroom setting. Perhaps, this child presents as a bit socially awkward but manages to otherwise makes some friends.

These are obviously made up scenarios but it helps to illustrate my point.

Both families are raising a child with Aspergers. However, each child is profoundly different as are the challenges faced by their respective families.

It would be wrong of family “A” to assume that family “B” was facing the same struggles as they are, simply because their kids share a diagnosis with the same name.

Likewise, it would be wrong of family “B” to assume that just because their child is mainstreamed, that family “A” should be able to do the same, simply based on both being diagnosed with Aspergers.

Does that make sense?

This gets even more complicated when you factor in more traditional forms of autism and pdd-nos. Everything falls under the same umbrella term but can appear as though they are totally different conditions in real life.

This is where I think that we are getting hung up.

Assumption is a dirty word. Nothing good comes from assuming anything about children or adults with autism. The same goes for their families as well.

Some of those touched by autism end up doing very well. Some of those touched by autism don’t and need some extra help. Everyone is different.

Having said this, I think its perfectly reasonable to expect that some parents would miss their life before autism entered into it. I bet dollars to donuts that it’s the stress and challenge they long to escape from for a little while, not necessarily their kids.

Even if they need a break from a challenging child, who are we to judge?

Have we walked in their shoes? Probably not. So how can we sit back and ridicule someone for being so overwhelmed by autism that they miss their life before?

I love my kids more than anything in the world. I would die for them without a second thought. Does that mean that they don’t overwhelm me or test the limits of my sanity? Of course not, I’m only human. Look, I get angry, frustrated, overwhelmed, exhausted and yes, even resentful at times.

The reality is that I have very challenging children. No amount of positive thinking or even fairy dust is going to change the reality of the situation. Don’t get me wrong, positive thinking is good. I try to find the positive in as much as I can. I celebrate even the tiniest of victories.

At the end of the day however, I’m tired, overwhelmed, exhausted and often times, questioning the wisdom of whomever thought I was the best choice for the job.

Having said that, its also perfectly reasonable for some families to be positive and upbeat about their lives with an autistic child. That doesn’t necessarily mean that their child is easier than yours. Remember what I said about assumptions? That applies here as well.

They may have simply found a way deal with things that really works well for them. It could also be that they are naturally happy and upbeat.

While some may find this frustrating, I’m happy for them.

I wish everyone could feel that way about their lives. Unfortunately, that’s not likely to happen.

The least we can do for each other, is be understanding and accepting of each persons unique situation. Their circumstances may not be your reality but it’s very real for them and that’s all that matters.

If we focused more on the fact that we are all on the same team, traveling on the same journey, just maybe taking different paths, perhaps things could be different.

This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos. I know how to spell but auto-correct hates me.  😉

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.


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Kim

I tell all my new parents that a bottle of wine and a good cry can be some of the best self-therapy available. I absolutely miss my old life, sometimes. I miss lots of things sometimes. Sometimes I miss being a kid, or being single and responsibility-free. I miss when I had the latitude to live for my job. I miss sleeping through the night, every night. Anyone who says they don't miss something about "before", either had a totally sucky before, or they're kidding themselves and lying to you. But, if you told me I could pick my "before" or my "now", I would pick my now, and my kids and my life, and every bad day I've ever had on Planet Autism. I'd pick it every single time.

Lost_and_Tired

Well said. 🙂

sylvia

Thank you Rob.. This IS ALL SO TRUE AND WELL SAID. .

Lost_and_Tired

Thank you. Your welcome.

Michelle

Great story! My son is 10 and he has autism. He is labeled as severely autistic. It is just a label. My opinion on your story is that has raising a child with special needs is challenging. I rarely discuss my deepest thoughts mainly because I do not want anyone to view my child as a burden. So at times I have gotten upset. It is a way to vent. If that makes sense. It is hard but I love him more than anything and he is a blessing. The reality of it all can be overwhelming though. What I think about the most is my future and how I will always have to take care of him. Thank you for your story it was real and I appteciate that.

Lost_and_Tired

Thank you for your honesty. 🙂

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