Moms of Kids with Autism Have Complaints

On  March 19, 2012 there was a news article in the official journal of the American Academy of Pediatrics about the impact childhood autism has on parental employment and earnings.  The results were even harsher than many expected and as harsh as parents of children diagnosed with an autism spectrum disorder have been saying for years.

To put what the study said in very understandable terms, let’s say that mothers of children with no health limitations earn $30,000 per year. 

The study revealed that mothers of children with a diagnosis other than an autism spectrum disorder earned 56% less than the mothers of children with no health limitations.  That translates into $13,200 per year.  That’s quite a drop in potential income generating power!

But mothers of children with an autism spectrum disorder earned 35% less than the mothers earning $13,200 per year. That translates into a yearly income of $8,580 per year … well below the poverty level identified by Statistics Canada for a single person, never mind a single parent raising a child with health conditions.

The study showed that across all three groups (fathers of children with no health limitations, fathers of children with a health limitation other than an autism spectrum disorder and fathers of children with an autism spectrum disorder), fathers were not impacted.  One can speculate that the reason for this is that the father is generally the higher wage earner and as such, the financially prudent decision in a two-parent family is for the mother to shoulder the issues pertaining to raising a child diagnosed with an autism spectrum disorder.

In almost 10% of two-parent families where a child is diagnosed with an autism spectrum disorder, only one parent generates the family income.

The conclusions of the study were that families of children with an autism spectrum disorder face significant economic burdens that other families with and without other health limitations do not face.  When substantially less income is coupled with expenses that must be incurred on behalf of a child diagnosed with an autism spectrum disorder, the economic impact on the family is that much harsher than most realize.

Imagine what the study would have revealed if they had included what happens in single parent families of a child with an autism spectrum disorder. 

If the worst income for a mother in a two-parent family was $8,580 the question that begs to be answered is this:  How does a one-parent family of a child with an autism spectrum disorder make ends meet?

Registered retirement savings plans are cashed in.  Investments and savings are decimated.  Anything of value is sold.  And at the end of the day, that’s still not enough to stay afloat.

What happens if a single parent of a child with an autism spectrum disorder finds themselves in the position where the only option left is to apply for welfare?  Anything and everything that can be converted into cash must be converted.  That means insurance policies have to be sold.  If something is being held in trust for anyone in the family unit, that interest has to be sold off.  Tools of the trade for those who are self-employed are exempt but by the time someone has nothing left to sell in order to pay the bills, the tools of the trade that are left are almost always obsolete since it’s rare that someone will purchase older tools of the trade unless they happen to be collectors of memorabilia along the lines of buyers on shows such as American Pickers and Canadian Pickers.   Yes, most parents go this route, believing that sometime in the near future, they’ll be able to pick up more work to help pay the bills and slow the massive financial hemorrhaging.

In Ontario, the asset limit threshold for a single parent raising one child is $1,610.  Sure there are exemptions but the problem with the exemptions is that by the time a single parent family of a child with an autism spectrum disorder asks the government for help, what could have been exempt was already sold off.  The problem with that is that in the province of Ontario, anything that was sold off in the three years preceding the application for assistance can be used to disqualify the applicant.  If the government deems that the price that was paid for an asset wasn’t as much as they feel could have been paid, that’s going to impact negatively on the application.

In Ontario, as in many other provinces, there are only two things that determine an applicant’s eligibility:  the applicant’s financial situation and the applicant’s willingness to take part in activities to find a job.

What isn’t taken into account are the hours invested by the applicant of a child with an autism spectrum disorder into dealing with medical appointments, therapy sessions, counseling for the child, school meetings, school emergencies (and trust me, any parent of a child with an autism spectrum disorder will tell you that there are lots and lots and lots of school emergencies), IEP meetings, placement meetings, and more.  All of that impacts on what the government perceives as an applicant’s willingness to take part in activities to find a job.

Can you imagine what happens when other serious health issues are blended into the equation?  What was previously an extremely difficult situation now becomes an almost impossible situation.

Some of you may be wondering why I’ve chosen to share this with you today.  The reason is simple.  My son is 16 years old and I’ve been a single parent for nearly all of those 16 years.  I’ve busted my sides to give my son and everyone involved in my son’s care what they need and want in order to address my son’s autism.  I’ve done likewise with regards to addressing his other serious health issues:  Myasthenia Gravis and a bilateral congenital kidney defect.  I have done likewise with regards to addressing his lesser health issues (of which there are many).  I’ve managed to hold my own for 16 years, with some years requiring more belt tightening than others.  To that end, I’ve experienced a personal satisfaction that I’ve survived against all sorts of odds that would have taken many of my friends and acquaintances down to the ground.

There’s so much I could say about how society fails to embrace families of children with serious health issues.  Negative societal attitudes with regards to disabilities is almost as crippling as the financial devastation that results from dealing with disabilities.  The people diagnosed with disabilities aren’t the problem; the way society treats people diagnosed with disabilities and their caregivers is the problem. 

The next time you have a chance to see the parent of a child diagnosed with disabilities, especially an autism spectrum disorder or an autism spectrum disorder alongside one or more other conditions, ask yourself why you haven’t stepped up to the plate as much as you could have.  Instead of making excuses for not contacting parents of such children, pick up the phone or send an email.  Ask if they’re available to work on contract basis so both you and those parents can benefit from the wealth of knowledge and resourcefulness that is part of who they are and part of their lives.

And if you know they are worthy of recognition for what they do, then start recognizing them.  It doesn’t have to be a trophy or a nomination.  Something as simple as accessing their expertise and paying them a decent contract wage for that expertise could surprise the daylights out of you.

Or, if it’s easier for you, you could just find lighter fare on Facebook or WordPress or Twitter with a simple click of your computer mouse.

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