Dealing with ignorance and insensitivity
I’m sorry to hear of your situation and of your wife’s illness. That must be very difficult on you and your family. I hope she is doing better and recovers soon. However I find it difficult to have empathy for your having 3 children with autism. I’m sure you understand once you have one child with autism the risk for the other children having autism greatly increases with each child thereafter. So knowing that information I would have assumed you would have been better prepared for the situation. Not everyone would understand your reason for bringing these children into the world and the burden they place on society. I wish you all the best but wanted to give my opinion (and of others who feel the same way but are hesitant at posting).
why did you continue to have children that will ultimately be a burden to society when you knew you and/or your wife were genetically defective?
The quotes above are among the numerous comments that I have received in either email or comment form recently. Since the my 1st CNN article ran earlier this week, it seems I have been getting these kinds of comments more frequently. I typically let these things roll right of me but that doesn’t address the root problem now, does it. Plus, sometimes these comments really do get offensive and the big ‘ol papa bear in me wants to respond.
What I always find interesting is that these people typically hide behind the name anonymous. I mean if your so confident in your opinion of someone else’s life choices, than why not be confident enough to share your identity, or at least come up with a clever screen name.
I realize that by putting myself and my family out there, I’m welcoming all kids of people with varying opinions into the mix. For the record, I fully support everyone’s right to their opinion, that’s not my problem.
I have seen this type of thing happen to others as well. Someone comes along and decides that they are going to share their unsolicited and unwelcome opinions about a family they come across. In the #Autism community, this typically revolves around families like mine, with multiple children on the #Autism spectrum. People, like the ones quoted above, assume that when child #2 was born, child #1was already diagnosed with #Autism. That’s a very big assumption and you know what they say about people who assume……….
In reality, many times kids aren’t diagnosed until ages 2 or 3. In some cases, like that of the Lost and Tired family, kids aren’t diagnosed until closer to 4 or 5 years of age. Other times, again, as with the Lost and Tired family, we are actually two families blended together.
Why does this matter?
So why does this matter? Well, in all honesty, it shouldn’t, and I truly, truly mean that. Building a family is a deeply personal decision and no one has the right to judge you for doing so. However, for the sake of addressing the above comment’s and possibly heading off anyone from asking the same insensitive questions, I’ll explain.
Let me start by explaining what I mean by a blended family. Actually, I’ll just give you an example. Gavin, is not my biological child. He’s is from my wife’s previous marriage and therefore has a different father. I have raised Gavin as my own since he was a 15 months old. When Lizze and I got married in 2003, and eventually had children together, we became blended. Although, now that I think about it, since I adopted Gavin, I suppose that changes things a bit. Well, anyway, we are at least blended genetically. Make sense?
Typically, when a couple decides to have multiple kids, I think it’s fair to say that many times they aim to have them about 2 years apart. While that may not apply across the board, I think it’s pretty safe to say that in many cases it does.
Having said that, with most kids being diagnosed between the ages of 2-5, how is a parent who has their kids about 2 years apart -whether planned or unplanned- supposed to know that their first child is going to be diagnosed with #Autism? The families that have 3 kids, 2 years apart, could still be in the dark about their 1st child, when they find out number 3 in on the way. It’s important to note that sometimes kids are diagnosed with #Autism even after the age of 5. So as you can see, it’s not that cut and dry, unless of course you have a working crystal ball and can accurately predict the future.
The bottom line
So what’s the bottom line here? Well, for starters, I think it’s pretty clear that no one sets out to have multiple kids on the #Autism spectrum. If there are people out there that do, well, I have not considered their intentions when writing this article. Having said that, even if they did seek to have multiple kids on the spectrum, whether I agree with them or not, it’s their choice. I have never heard of anything like that before but that doesn’t mean it hasn’t happened.
Now, moving on to the more typical scenarios.
Is it true that there is a genetic link to #Autism? Yes, that’s true. Does it mean that if you do happen to know your 1st child is on the #Autism spectrum, you shouldn’t have more kids? While that’s not my decision to make, I’m inclined to say no, and here’s why.
Nothing in life is ever for certain, except that our time on this earth is limited. There are tons of couples that continue to build their family after a diagnosis of #Autism. Sure, some of those families may end up with more kids on the #Autism spectrum, but many others won’t. Are the families with multiple kids on the #Autism spectrum any less of a family than those with only one, or for that matter, none? Of course not, and if you answered yes, then I truly feel sorry for you.
Building a family is one of the most amazing things the human race has accomplished. Is it right for someone to sit in judgement and decide that someone else’s family is somehow wrong, because they are faced with more challenges? Does anyone have the right, ethically, to cast judgement on another because they have made the personal choice to continue building a family after an #Autism diagnosis? The answer is absolutely and unequivocally no.
Even though we may need help along the way, be it governmental or from other more compassionate and understanding human beings, our families shouldn’t be considered a burden on society. In fact, to the contrary, society could stand to learn a few things from families like mine. Things like unconditional love and acceptance comes to mind. Appreciating all the little things in life and never taking anything for granted, is another. How about, never giving up, no matter how alone, overwhelmed, frustrated or lost and tired we feel.
Despite all the many challenges we face as special needs families and any help we may need along the way, our families are just as valid, amazing and beautiful as anyone else’s. Please don’t let anyone, ever convince you otherwise. 🙂
While I fully support your right to form an opinion, that doesn’t make your opinion anymore valid the what’s written on a scrap of paper inside a fortune cookie. If you feel the need to criticize my family or anyone else’s for that matter, solely based on the fact that our beautiful, amazing, wonderful and yes, challenging kids have #Autism, I suggest you peddle your wares else ware, because we’re not buying.