Thursday, December 8, 2011

Glass Half Full of Wishful Thinking

You know, I try to be a glass half full type of person when it comes to being the parent of children with autism.  I have found it is best to look on the bright side and stay hopeful about the future while not dwelling on the unpleasantries that go along with autism.  But I have also found it is equally important to acknowledge the realities of autism and to resist the urge to sugarcoat the situation.  It is a fine but necessary line to walk if you want to keep your sanity in the face of autism.

But there is looking on the bright side while acknowledging reality and then there is this new paper that talks about the "benefits to the lived experiences of female primary caregivers of children with autism."  In this paper, the authors interviewed 8 mothers who were  primary caregivers for children with autism and concluded that "benefits were found in all areas of questioning, including financial, social, familial, health, and employment implications, in addition to benefits arising from activities and involvements taken on as a result of raising a child with autism"

I haven't read the full paper but the conclusion alone is so absurd as to be laughable.

Having a child with autism has financial benefits?  Oh come on.  Providing even the basic therapies for autism - behavioral, speech, and OT/PT - can be hugely expensive, especially if the costs are not picked up by insurance.  That doesn't even begin to consider all of the other associated therapies that might be required or the lost wages from having one parent staying at home.  And I won't even touch the prospect of having to provide life-long support for a child who might be unable to ever case for themselves.

I could go on as to why the other "benefits" are equally bad but I don't really see the point in depressing everybody.  The bottom line is that having a child with autism can and often does imposes a heavy cost to the parents in all of the areas listed.

I can't imagine that the authors were able to support that conclusions without resorting to cherry picking through the question answers or engaging in some wishful thinking.  And even if, by some miracle, they managed to find 8 mothers who did say that having a child with autism gave them all of these benefits, I doubt that their experiences would be representative of mothers' experiences in general.

I have to wonder what the point of the current paper was since it flies in the face of most of the other available data.  The last sentence in the conclusion seems to suggest the purpose is to help improve the lives of  families effected by autism - "In this way, clinical nurse specialists may encourage and contribute to support systems that foster a positive experience for caregivers of children with autism spectrum disorder, the children they care for, and their families"

But I can say, from my own experiences, the absolute last thing a family needs is a medical professional trying to blowing sunshine up your butt.  It is hard enough to come to terms with what autism means and what impact it is going to have on your life without someone purposely distorting the picture.  And until you manage to come to terms with and accept what autism means for your family,  you are never going to be able to deal with it over the long term.

Don't get me wrong, raising a child - even a child with a disability such as  autism - can be a very rewarding experience for a parent.  But let's not pretend that autism doesn't come with a high price tag.


Markoulakis R, Fletcher P, Bryden P. Seeing the glass half full: benefits to the lived experiences of female primary caregivers of children with autism. Clin Nurse Spec. 2012 Jan;26(1):48-56. PubMed PMID: 22146274


  1. OK, after 12+yrs of being a SAHM, I have to admit not going to work everyday has it's perks... not going to work.

    Financial... laughs. Yes, we are better off now then when we started but my Dh also has 3 extra part-time jobs on top of the farm. Has nothing to do with autism.

    Health - looks at the bottle of high bp pills... NOT!!!

    Social - lucky for us Dh has those 3 other jobs plus mine can be left with a sitter... oh, you mean actual friends not "do's"... moving on to the next...

    Yes, this autism thing is absolutely wonderful, marvelous... If I truly wished to put my life on hold for 20yrs while I raise them and then have to find care for the younger....

    Do I regret having them... never. I have NEVER blamed them, never regretted the choices I have made. Have I liked having to make those choices... No. But, it is what it is... and that's the way life goes sometimes.

  2. Following in the footsteps of FW2:

    Financial and Employment: I had to give up my lecturing career (which had such great flexible hours, it was an otherwise perfect mum job), I couldn't even work part-time anymore because of my son's extremely high needs.

    Social and familial: Our marriage came extremely close to self-destructing because of the incredible levels of stress caused by raising an autistic child. We lived an isolated existence where my son wouldn't let people visit or let us visit people for a very long time. How's that for great for your social life?

    Health? Got to be kidding. Try back-pain from lifting a 4 year old to help him all the time with his limited skills and sensory issues. Try the headaches, lack of sleep and impact from excessive stress and isolation. Really great for the health.


    I love being a mum, I love my kiddies, but I know from personal experience that raising an autistic child is extremely hard and draining - no matter how positive my attitude - compared to raising a child who does not have autism (like my youngest). Any study that ignores or makes light of that reality, is not helping those who need the help the most.

  3. I'll join the chorus, which is timely because I just left a similar message over at TPGTA about the costs and other hardships associated with raising an autistic child. I assume I will get a barrage of criticism.

    WE pay aprox 35k (AUS) a year for my sons therapy. Just yesterday I was talking to a woman who sold her home to pay for her daughters ongoing ABA. That woman is a single parent now as her marriage failed under the pressure. And like a&o my marriage too came close a few times to disintergrating due to the unrelenting stresses.
    When my son was 8 months of age I was diagnosed with Post natal Anxiety, a direct consequence of my sons constant crying and need for motion.
    Wine has been saviour through it all, but I didn't stop at the one glass a day that might provide health benefits :)
    I understand how helpful it is to find some positives about raising an autistic child. It's been helpful and reassuring for me on my own journey to acceptance. But the risk here is that these sugar coating tales lead desperate parents to develop an even stronger sense of marginalisation and disconnection from others. WE have enough misinformation about autism to counteract without adding more.

  4. Looking at the abstract there is no information about how the participants were selected (perhaps the author selected people who intentionally would give positive responses) and we have no idea what the overall level of functioning of these children are... the research is dubious at best and more likely supports someone's attempt at "feel good" research in autism.

    I'd be willing to bet if you conducted this semi-structured interview and then cross-referenced it overall functioning on the Vineland-II Adaptive Behaviour Scales or ABAS-II you'd see a very different picture.

  5. I had not realized that being an autism mom is so great.

    I have decided to begin advocating that all children intentionally be given autism at birth via DNA therapy and toxic overdose for the benefit of the mother's parenting experience.