Autism and the stigma of parenting

by Rachel McNamara

At the end of this article, I want you to tally up your score to see how you rate as a parent…….NOT! But it may have almost seemed like a reasonable request given the how readily advice is given on parenting in magazines, books and on websites.

The awareness that we can affect the course of our children’s life journey has made us paranoid that every little thing we say and do could mean the difference between them being unhappy and happy in life.

Advice is wonderful; pick and choose which strategies you and your family feels most comfortable with but avoid sources of advice that suggest that their way is the best way for everyone and/or that you will be a ‘bad’ parent or ‘practice bad parenting’ if you choose to do things differently.

There is no ‘good’ or ‘bad’ parenting, just different parenting styles and different choices by different parents under different circumstances for different children.

With regards to your own parenting, don’t ask how you can be a better parent; ask how you can help your child to achieve a specific goal or to manage a specific challenge. Doubting your overall parenting is not helpful and it puts your mental health at risk by increasing your anxiety and feelings of guilt.

Just recently Jeremy expressed an observation that he made to me. He said “Dad is the one who tells us what to do and that is what he does at work, he teaches people and you are the one who comes up with new ideas! You are like a scientist!” I loved that observation of course and my new title of ‘Work at home scientist’.

I reiterated what Jeremy said to my husband, who in his usual quick witted but not always tactful manner said “Yeah and the boys are your lab!” I laughed because I understood his sense of humour but some of you may already be making assumptions about me, given that comment.

I am not the ‘refrigerator mum’ that psychologists referred to before they disproved that prejudiced theory1,2 as responsible for an Autism Spectrum Disorder (ASD) in our children. I love my children deeply and I express that with plenty of hugs for both my boys and for Jeremy kisses (Damian hates kisses).

However, I do have a diagnosis of ASD. Given that knowledge, would it be unreasonable to assume that you might judge my parenting ability by comparing it to those parents without a diagnosis of ASD either subconsciously or consciously?

Recently, I read a disturbing post on a FacebookTM page promoting awareness of ASD. Mostly, they post really uplifting articles but this time it was from an anonymous psychologist who made some very unfair judgements and generalisations:

“Truth be told there are days when I feel like a hanger-on in the court, part of the retinue of hired help. A participant in the parade the parents surround themselves with to show the world their level of commitment. Together we “professionals” form a palisade behind which the family hopes to hold off intrusions form the greater community. But, the moment we buy into the argument that “the world needs to change” (and not the family) we become unwitting diplomats in defence of dysfunction”

Clearly, the psychologist was blaming the parents for the behaviour and/or mental health of his clients that had a diagnosis of ASD. I and many other parents of children with an ASD who read that article were deeply offended with good reason.

To make matters worse, one reader made the following comment under the post:

“I think parenting is the biggest problem with autistic children. Instead of putting out the effort or taking responsibility for their own behaviour and bad parenting ideas they blame the Autism and everything and everyone else. They have the attitude that it’s never the parent’s fault how a child turns out when in fact it is. It’s a pattern I see on all the Autism pages and groups. Would the parents have accepted help? Probably not. We need to treat families, not just individuals, and it isn’t someone else’s responsibility to fix another’s bad parenting. There are a lot of good teenagers out there autistic and not…but they choose not to see that because it doesn’t live up to their stereotypes. The people who whine about blaming the parents are the worst parents of all, after all an ASD is genetic.”

I feel the need to address that highly prejudiced comment, sentence by sentence.

“I think parenting is the biggest problem with autistic children”

The author of that comment has shown from the beginning her position of extreme prejudice by referring to children with an ASD as a ‘problem’. In addition, she has not shown respect to the children by referring to them as ‘autistic children’ rather than referring to the children first and the diagnosis second (because the diagnosis does not define them). That is the reason that I refer to ‘people with an ASD’ in my blogs, although you may notice that where quoting directly from journal articles or other people, the wording may not be favourable.

“Instead of putting out the effort or taking responsibility for their own behaviour and bad parenting ideas they blame the Autism and everything and everyone else”.

By definition, ASD is the reason for atypical behaviour not an excuse. In fact, diagnosis of ASD is made based on those restrictive and repetitive behaviours and the behaviours that represent social communication challenges in the first place.

The facts are that mother-child relationships of children with an ASD have been shown to be of good quality2,3,4 and even when under significantly more stress due to the increased challenges of parenting a child with an ASD cope just as well with parenting tasks as any other mother4.

“It’s a pattern I see on all the Autism pages and groups”.

That is because the author is clearly more ignorant than most of the people on the pages and groups that she refers to. People who are members of ASD pages and groups are much more likely to have more experience and knowledge of ASD than people who are not members and so lack the prejudice of the average person with regard to ASD (as would be discussed on more general FacebookTM pages and groups).

“Would the parents have accepted help? Probably not. We need to treat families, not just individuals, and it isn’t someone else’s responsibility to fix another’s bad parenting”.

Parents with children with ASD are seeking help all the time, I am one example of that and every other parent of a child with an ASD that I know also does that, so her comment is an unfair assumption and exposes her biased opinion. The author says that families not individuals need to be treated, which most therapists actually do (Jeremy’s child psychologist worked primarily with me, providing me with strategies for Jeremy’s behaviour and other therapists have trained me to administer basic therapies at home in between appointments) but then she contradicts herself by saying that no one else should be responsible for ‘fixing’ another’s ‘bad’ parenting.

It is not ‘bad’ parenting; it is the need for additional strategies to help the child with a diagnosis of ASD cope with their unique challenges. In fact, it is an important aspect of the overall management of ASDs that families are supported, educated and guided by general practitioners and other health care professionals5.

“There are a lot of good teenagers out there autistic and not, but they choose not to see that because it doesn’t live up to their stereotypes”.

The author is forgetting that an ASD by definition is a ‘spectrum’ and that each child will have different challenges and therefore a different expression of challenging behaviours. Was I an example of a more functioning teenager because I had a more passive presentation of an ASD and I said nothing to anyone and suffered in silence? No of course not.

Most parents of children with a diagnosis of ASD are aware that each child on the spectrum is unique. I have mostly found that it is the ignorant people that rely on stereotypes and sure enough, the author is employing the use of a stereotype in the first place by referring to ‘good’ and ‘bad’ teenagers.

“The people who whine about blaming the parents are the worst parents of all, after all Autism is genetic.”

And there we have it, the icing on the cake; the author implies that a person with a diagnosis of ASD must be a flawed parent. Firstly, she says don’t blame the ASD for the child’s behaviour but then she contradicts herself by implying that parent probably has an ASD and that an ASD must make them an inferior parent.

In addition, according to the author, because I am ‘whining about blaming the parent’, I am the worst parent of all. Like anyone else, I am not perfect but I know that I have reached a point in my life with parenting where I confidently and consistently apply effective strategies to help my children overcome their challenges and I love and respect them like no-one else ever could. My ‘whining’ as the author states it, is me expressing the feelings of alienation and outrage due to her prejudiced comments and if there is one thing I have learned over time you should always validate people’s feelings.

It must be remembered that parents are not born into their carer roles regardless of disability and that they are constantly learning and evolving. In fact, a recent journal article on mothers of children with disabilities that I read, highlighted the unique skills and competence that the mother acquires and refines over the course of their experiences ‘through the process of negotiating, advocating and mediating on behalf of their children, at times resisting or challenging the dominant social order, educating others and so on’6.

The authors of the article also argue that ‘mothers are more than allies to their disabled children, as they experience directly and by proxy many of the discriminatory practices and attitudes their disabled child face’6.

Indeed, families of a child with an ASD have been shown to experience significant stigmatization from the community in the form of blame for the onset of ASD or its deterioration, social avoidance, pity and contamination7.

An excellent review on the effects of stigma on population health inequalities states that ‘stigma thwarts, undermines, or exacerbates several processes (i.e., availability of resources, social relationships, psychological and behavioral responses, stress) that ultimately lead to adverse health outcomes’8.

Parents are people in their own right, imperfect but doing their best for their child/children who they love. They deserve respect as individuals and should not be stigmatized. Stigma is an extra disadvantage that we all have the right to do without.

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