I live in a small community in Southern, CA. Be it small, there are a lot of families here who are dealing with autism; too many in my opinion. You encounter them everywhere, as well as charities for the disabled that bring teen/adult persons with autism out into the community. I mean everywhere: the mall, fast-food restaurants, movie theaters, book stores, parks. Last year, a girlfriend and I were doing a play date with our children and we realized that there were more children at the park with autism than not: including our own. She recognized a family whose children were in Special Ed. with her son; I ran into a family who were part of our autism support group; and another kid with autism, a triplet, rode into the park on his bike. Whether autism is an epidemic or not, that’s a lot of autism at the park on a warm, Saturday morning.
What also stands out in my community is that many of the autism moms are single parents and the dads are either no longer in the household or barely in the picture. In my own circle of friends, several of them are going through divorces right now. It’s a painful situation, particularly when substance abuse, infidelity, and unemployment are involved. Because the fathers are no longer in the home, that puts the majority of the responsibility of raising a child with autism on the mother. And, if there is more than one child in the household with special needs, one can only imagine the degree of stress these moms are under.
Now, there are some who will read these words and immediately accuse me of painting an unfair picture of autism. They’d say I was exaggerating and that raising a child with autism doesn’t provide undue stress…that the problem is with the parents and their perception of their children. Many in our community feel that autism is not a disability and it’s our attitudes that are disabling. Well, I respect that point of view — even though I don’t share it — because there needs to be room in our community for differences of opinions. But, let me give you a glimpse of life for one of my soon-to-be single girlfriends in the midst of a divorce. Because her husband has been absent from the household for the past year, she alone has to take her son places who is 11-years-old and just mastering how to eliminate in the toilet. So, for the past year, she’s had to change his adult diapers in the women’s restroom whenever they go out. The minute he walks in, she gets flack from people who don’t know the situation. Try explaining to other ladies what a boy that age is doing in the women’s restroom. Then, try explaining the diapers. At least if the husband were present, he could take the boy into the men’s restroom in the handicap stall and deal with the diaper-changing issue in privacy. Not having her husband around does in fact put undue stress upon her; and, her son’s inability to crap in the toilet at 11 has indeed been disabling to him. Plus, it’s regulated him to lower-functioning Special Ed. classes where there are aides willing to change his diaper. Thank goodness he’s made remarkable improvement lately and is now about 90% potty trained.
Our local autism support group/organization seems to have blinders on when it comes to these matters. Surely, those who sit on the board and make decisions about programs must see or hear about the breakup of many of our families, but they’re not forthcoming with support. Mind you, some of these marriages cannot be salvaged; issues and wounds are so deep that divorce is inevitable. However, that doesn’t mean they can’t benefit from counseling…particularly by someone who understands the needs of autism; and, someone skilled in helping families move forward in a healthy way, but keeping the autism needs front and center. If I sat on our board I would make support group meetings and weekend seminars for family counseling a priority, because I know many of these families don’t have the resources to do this on their own. Some organizations do, like TACA (Talk About Curing Autism Now). They are known to have support meetings where they bring in counsellors to help with family issues.
As far as statistics on autism and divorce are concerned, like everything else in our community, it’s up for debate. The actual divorce rate can garner as much discussion as vaccines because there are those who don’t want to attribute divorce to autism and/or own that autism can cause families to break apart. For years, the divorce rate was quoted to be as high as 80%, but the original source of that statistic could not be confirmed.
I personally don’t need a statistic to tell me the toll that autism can take on a family because I see it everyday. Families who are raising/caring for those with autism have challenges that typical families don’t have, and many times they start before a child is formally diagnosed. We have to fight our insurance companies for services. We have to conquer a mountainous learning curve when doctors send us home with little information. We have to go up against schools that fail to see the promise in our kids. We have to fight our districts when they’re out of compliance. We have to advocate for our children because nobody else will. We have to deal with negative comments in public from strangers. We have to monitor where we go based on our children’s behavior. We have to cope with judgment from friends and families who think our children are just poorly parented. We have to deal with rejection from friends who walk away. We have to live in isolation when depression sets in. We have to budget because autism services can make you broke. We have to give up jobs whose schedules don’t accommodate intervention. We have siblings that get lost in the shuffle when all the attention is on the child with special needs. I can sit here all day and fire off the hardships that we face on a daily basis; yet, many will argue that these types of stresses play no role in the breakdown of a family or marriage.
And, has anybody stopped to think about the toll autism takes on dads, being that the vast majority of kids with autism are boys? According to Autism Speaks, 1 in 70 boys have autism. No disrespect to daughters, but fathers want their sons to grow up in their image. And, family legacies are typically passed on through the elder son. Imagine if the son with autism was your oldest son. Or, imagine if that son was your only son. Being that only an estimated 10% of those with autism recover, there are many sons out there who may not be able to carry on their family legacies at all. Sons carry on bloodlines. Sons carry on the family name. Sons – more than often – inherit the family trust and are given great responsibilities. Due to autism, there are going to be family bloodlines without a male heir because many of the sons are not high-functioning enough to marry or have children of their own. Nobody ever stops to think about this…that we will have a generation of sons who will change the dynamics of the American family because they will not have the capacity to follow-through with tradition. Based on this, I think autism hits many – not all – but many fathers doubly hard because they have to readjust where they place their family legacy, hopes and dreams.
I will never justify a father walking out on his family. But, when you think about some of these issues and the weight it can place on a person who’s not ready to deal with it, you begin to understand the impact that autism has on many dads. Many dads aren’t equipped to deal with this — who is? Many didn’t expect to deal with this — my husband included. Most people don’t have a doggone clue about the challenges of autism until it lands smack-dab on their doorstep with a bang!
But, amidst these life-changing situations dads must go through, there are fathers who stand out amongst us. They stand out in the face of heartbreak, disappointment and marital strife. They stand out at the support group meetings and out in the community. They stand tall like a beautiful Saguaro in the middle of a dry, desert sea: they are the fathers who stay in the picture.
Yes, there are fathers who stay in the picture and don’t vanish quickly like ghosts into the woodwork or hit the door when the going gets tough. They stay, stick it out, and I view them as nothing less than courageous, committed, loving dads. They stay despite the financial, emotional, and psychological uncertainty of autism. They stay despite what others think. They stay because this is what their heart and soul tells them to do. And, we are blessed because they stay.
My husband is one of the dads who stayed in the picture and I thank the Lord for that everyday. I cannot imagine being a single mother and having to deal with all the intervention my son has had to have. I would not have been able to do it! Just the scheduling and chauffeuring him to one appointment after the next was a full-time job: gainful employment would not have been possible. My son at one point had his own calendar in the household by which we all lived by because he needed his intervention. So, while some in our community would argue that autism typically plays no role in the breakup of a family — you should consider yourself lucky if that’s your situation. And, consider yourself even luckier if you have a husband/partner who stayed.
I said all of that to simply say this — I want to honor the fathers who stay in the picture this Father’s Day. I just wanted to give a public “shout out” to them and let them know their presence does not go unnoticed by me. These fathers are my heroes. They are my autism patron saints! And, I wish I could name names because there are three fathers in my community that I would really like to acknowledge publicly for what they do for their kids. All of them have low-functioning children who are profoundly non-verbal — and they stayed in the picture. I see these dads all the time out in the community and I secretly stand back, watch, and admire them.
Actually, saying that I admire them is really an understatement. I wish I had the proper words to tell them and all the other fathers how much you all mean to me. Because I lack the words, I’ll just say this –
You’re the best! God Bless you all. And, I wish you a wonderful Father’s Day.
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