The Stigma of Parenting

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 autism 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 Autism Spectrum Disorder. 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 autism either subconsciously or consciously?

Recently, I read a disturbing post on a FacebookTM page promoting awareness of autism. 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 autism. I and many other parents of children with autism 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 Autism 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 autism as a ‘problem’.

“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, autism is the reason for atypical behaviour not an excuse. In fact, diagnosis of autism 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 autism 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 autism 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 autism pages and groups are much more likely to have more experience and knowledge of autism than people who are not members and so lack the prejudice of the average person with regard to autism (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 autism are seeking help all the time, I am one example of that and every other parent of a child with autism 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 autism cope with their unique challenges. In fact, it is an important aspect of the overall management of autism 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 autism 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 autism and I said nothing to anyone and suffered in silence? No of course not.

Most parents of children with autism 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 autism must be a flawed parent.  Firstly, she says don’t blame the autism for the child’s behaviour but then she contradicts herself by implying that parent probably has autism and that autism 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 autism have been shown to experience significant stigmatization from the community in the form of blame for the onset of autism 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.

Note: AMAZE produces an Alert Card that can improve awareness of bystanders when the behaviour of your child is attracting unwanted attention. Details of this card can be found on the AMAZE website.

References:

  1. Folstein, S.E and Rosen-Sheidley, B. Genetics of autism: Complex aetiology for a heterogeneous disorder. Nature Reviews Genetics 2001; 2: 943-955
  2. Orsmond, G.I. Mailick Seltzer, M. Greenberg, J.S. Wyngaarden Krauss, M. mother-child relationship quality among adolescents and adults with autism. American Journal on Mental Retardation 2006; 111(2): 121-137
  3. Montes, G and Halterman, J.S. Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics 2007; 119:e1040-1046
  4. Smith, L. E. Greenberg, J. S. Mailick Seltzer, M. Hong J. Symptoms and behavior problems of adolescents and adults with autism: Effects of mother-child relationship quality, warmth, and praise. American Journal of Mental Retardation 2008; 113(5): 387-402
  5. Myers, S.M and Plauche Johnson, C. Management of children with autism spectrum disorders. Pediatrics 2007; 120: 1162-1182
  6. Ryan, S. Runswick-Cole, K. Repositioning mothers: Mothers, disabled children and disability studies. Disability & Society 2008; 23(3):199-210
  7. Milacic-Vidojevic, I. Gligorovic, M. Dragojevic, N. Tendency towards stigmatization of families of a person with autistic spectrum disorders. International Journal of Social Psychiatry 2012; DOI: 10.1177/0020764012463298
  8. Hatzenbuehler, M. L. Phelan, J.C. Link, B.G. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health2013; 103(5):813-821
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Autistic traits and ability

I have a preference to associate autistic traits with ability rather than disability.*

An autistic trait is a characteristic that tends to be more prevalent in people with an Autism Spectrum Disorder (which I will refer to as autism throughout this blogpost). There are a huge range of autistic traits. I mentioned a few autistic traits in my first blog such as a natural sense of fairness, justice and honesty, being creative in several interest areas and a great loyalty to others.

There have been studies in scientific literature about the character of relatives of those with autism. These studies show that relatives of those with autism are more likely to have greater than average autistic traits due to its genetic inheritability**1, 2, 3, 4

Everybody, including but not limited to those people with a diagnosis of autism, have a different combination and expression of autistic traits, it is just that those with autism find that their traits exceed the limit defined by an autism diagnosis and they impact significantly on their ability to meet the expectations of others.

There have been at least two occasions where someone has said to me that “Everyone has autism!” There can be many ways to interpret a comment like that. It could relate to the confusion between autistic traits and an autism diagnosis itself and/or refer to the increasing numbers of people diagnosed with autism.

Firstly, let me state the obvious: Everyone does not have autism! People who do not have autism may have some or a few traits that people with autism also have but not the enough traits to warrant a diagnosis. The prevalence of autism in Australia is estimated to be approximately 1 in 62.55, which certainly doesn’t represent everyone.

With regards to increasing prevalence of autism, no-one can be completely certain why diagnosis of autism is increasing but it is likely to be significantly affected by changes in diagnostic concepts, criteria and improved identification6.

Suggesting a link between autistic traits and ability, is an area of contention for some families. Some people with a diagnosis of autism and their families are faced with greater challenges than I do myself and as a mother to my boys. It may well be that the challenges for a person with autism or their family are so extreme that they personally cannot conceive of such an association to the point that they feel such an association minimizes the extent of their challenges.

I cannot speak for everyone’s experiences and their feelings about those experiences but I am passionate about speaking out about the experiences and feelings of many others that are overshadowed by the rhetoric of disorder and cures. I personally do not feel that challenges and ability are mutually exclusive. I even think that one may sometimes lead to the other.

Although, much of the scientific literature focuses on the ‘impairments’ of people with autism, I have come across several articles that have chosen to focus on the benefits of autism. These benefits include attention to detail and affinity with systems, which can lead to great ability particularly in fields of interest to the person7, 8.

In addition, it is estimated that 10% of people with autism have Savant Syndrome9 and Savant Syndrome appears to be closely linked to autism***10, 11.

‘Savant syndrome is a rare but remarkable condition in which persons with developmental disabilities (including but not limited to autistic disorder), or other central nervous system injuries or diseases, have some spectacular “islands of genius” that stand in stark, jarring contrast to overall limitations’9. Savant abilities appear to exist primarily in five main areas; those of music, art, calendar calculating, lightening calculating and mechanical and spatial skills9.

Autism was not recognized before the 20th Century so we can only make an educated guess that any particular misfit genius of our past actually had autism or other learning differences and there are books written exploring that concept12, 13.

Albert Einstein12, 13, Thomas Jefferson12, Charles Darwin13 and Hans Christian Andersen13 are several of many great achievers from our past considered highly likely to have had autism. I find it interesting that people with a diagnosis of autism often struggle so much with change in their lives yet may be responsible for the greatest changes in the journey of the human species.

Studies that have allowed more liberal definitions of savant syndrome have found higher prevalence of the condition among people with autism11 and that is why I believe that these abilities are distributed in strength in a continuous gradient across the general population with higher incidence in those with autism in much the same way that autistic traits have been shown to be3, 14.

Just like focussing on training the talent of the savant to improve overall outcomes for the savant9, I favour a strong focus on training the talents of those with autism to improve their overall outcomes.

It is always a good idea to always assume competence in someone with autism. In this day and age where augmented communication is possible some of those people with more extreme presentation of autism have finally been able to express themselves such that we can listen to what they have to say and understand their experience of the world around them.

Tito Rajarshi Mukhopadhyay, Carly Fleischmann, Ido Kedar are a few of those people with more extreme presentations of autism that we can learn from, through books that document their thoughts and experiences15, 16, 17.

How would you feel if as a parent, a relative or a teacher that you had been interacting around a child as if they were not present as a competent person, when in fact they are there and they do understand every word you are saying about them but may not be able express themselves in a way that we may feel we need in order to recognize them as equals?

Usually, we assume competence and ability with children; we strive for them to learn and to be capable. As long as we continually encourage, guide and praise our children then we make that assumption of competence a positive experience, which enhances their potential.

There is a popular quote “When you have met one child with autism then you have met one child with autism”. Simply, this quote refers to the fact that all children with autism are different and it also means that we cannot begin to predict what any one child is capable of in the future.

When we take away that assumption of competence we doubt them, we limit their potential and essentially we are saying to them that they are not as capable of achieving something because of their autism. That is essentially a form of stigma and it immediately puts them at a disadvantage compared to other children.

It is our responsibility as parents and professionals to search for different ways for our children to express their competence and participate in this world as respected equals.

*Although, it is important to acknowledge disability. My understanding of disability is informed by the ‘Social Model of Disability’.

**The genetics of autism is very complex, there are a wide range of genes and gene combinations involved and complex environmental factors as yet undetermined may predispose expression of those genes. Nevertheless, it has been established that genetics plays a strong role in the origin of autism4.

***The term ‘Savant Syndrome’ may actually be ableist. Have a read of this interesting blogpost on autism and unique abilities: https://unstrangemind.wordpress.com/2015/06/10/s-is-for-stop-saying-savant-syndrome-and-splinter-skills/

References:

  1. Folstein, S.E and Rosen-Sheidley, B. Genetics of Autism: Complex aetiology for a heterogeneous disorder. Nature Reviews Genetics 2001; 2: 943-955
  2. Piven, J. The Broad Autism Phenotype: A complementary strategy for molecular genetic studies of Autism. American Journal of Medical Genetics (Neuropsychiatric Genetics) 2001; 105: 34-35
  3. Constantino, J.N. and Todd, R.D. Autistic traits in the general population: A twin study. Archives of General Psychiatry 2003; 60(5): 524-530
  4. Micali, N. Chakrabarti, S. Fombonne, E. The Broad Autism Phenotype: findings from an epidemiological survey. Autism 2004; 8(1):21-37
  5. Buckley, B. Autism prevalence continues to rise in Australia. A presentation at the inaugural ASfAR conference. 7 December 2012 “Interpreting data on Autism Spectrum Disorders from (a few) Australian Government sources” PowerPoint presentation. Accessible at www.a4.org.au/a4/node/622
  6. Fombonne, E. The changing epidemiology of Autism. Journal of Applied Research in Intellectual Disabilities 2005; 18:281-294
  7. Baron-Cohen, S. Is Asperger syndrome/high-functioning autism necessarily a disability? Development and Psychopathology 2000; 12:489-500
  8. O’Connor, K and Kirk, I. Brief report: Atypical social cognition and social behaviours in Autism Spectrum Disorder: A different way of processing rather than an impairment. Journal of Autism and Developmental Disorders 2008; 38:1989-1997
  9. Treffert, D.A. Islands of genius: the bountiful mind of the autistic, acquired, and sudden savant. London, Jessica Kingsley Publishers, 2011
  10. Heaton, P and Wallace, G.L. Annotation: The savant syndrome. Journal of Child Psychology and Psychiatry 2004; 45(5):899-911
  11. Howlin, P. Goode, S. Hutton, J. Rutter, M. Savant skills in autism: Psychometric approaches and parental reports. Philosophical Transactions of The Royal Society B (Biological Sciences) 2009; 364: 1359-1367
  12. Ledgin, N. Asperger’s and self-esteem: Insight and hope through famous role models, Arlington, Future Horizons Incorporated, 2005
  13. Elder, J. Different like me: My book of autism heroes, London, Jessica Kingsley Publishers, 2006
  14. Losh, M. Childress, D. Lam, K. Piven, J. Defining key features of the Broad Autism Phenotype: A comparison across parents of multiple- and single-incidence autism families. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics 2008; 147B(4): 424-433
  15. Kedar, I. Ido in autismland: Climbing out of autism’s silent prison, Sharon Kedar, 2012
  16. Mukhopadhyay, T. R. How can I talk if my lips don’t move? Inside my autistic mind, New York, Arcade Publishing, 2008, 2011
  17. Fleischmann, A. Carly’s voice: Breaking through autism, New York, Touchstone, 2012

Introducing Autism: A personal account

“He’s just odd like you!” my husband grinned; his humour had exposed a truth that I was previously unaware of. I had been expressing my concern at my two year old son’s peculiar behaviour to my husband when he uttered the words that forever changed the way I interpreted the world and how I thought the world interpreted me.

I had sometimes reflected on my life with the purpose of trying to understand past experiences where it was obvious that I was completely unable to converse or where I had exhibited extreme vagueness beyond what would be considered a personality trait and yet in contrast to that, I excelled academically. However, until my husband’s comment that day, I did not know that I appeared generally ‘odd’.

What occurred to me next was that if my son had inherited the difference that made me appear ‘odd’ to others then he might experience a life like I did. All I could think about was that I didn’t want him to have a childhood like mine, being unable to relate to and being afraid of my peers. I knew then that I was going to do everything I could to find out what it was that my son and I had in common that made us different so that he could have a ‘head start’ finding his niche in the world.

Shortly after that, perhaps days or weeks, I watched a documentary on Aspergers Syndrome (AS). I hadn’t intended to watch it, it just happened to be on when I sat down to watch TV and it caught my interest such that I didn’t change channel.

The reason it caught my interest was that it referred to an Autism spectrum. It had previously occurred to me that my communication difficulties were like a form of Autism but I was unaware that Autism existed on a spectrum until then. I was only aware of the more extreme presentation of it without any understanding of what a person with Autism was thinking or feeling. Although I couldn’t relate to everything that the documentary addressed, Aspergers Syndrome described as an Autism Spectrum Disorder (ASD) was the closest that I had come to an explanation that fit.

Broadly speaking an ASD is a complex neurological condition which affects social communication and is also characterised by restricted and repetitive patterns of behaviour interest and activities*. As a Spectrum Disorder it represents the wide range and complexity of challenges and abilities of people with an ASD.

According to one of my most favourite books on ASDs, ‘Inside Asperger’s Looking Out’ by Kathy Hoopmann:

‘In general, a person with Asperger’s syndrome, or high-functioning autism, is someone who may have:

  • Difficulties relating to others in social situations
  • Difficulties understanding nonverbal communication
  • Heightened sensitivity to touch, sight, hearing, taste and smell
  • Set routines and a strong preference for order
  • An intense ability to focus in specific interest areas
  • A great loyalty towards others
  • A unique mind which is able to see life from a new perspective’

Another of my favourite books ‘Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models’ by Norm Ledgin, lists positive traits of ASD including: a natural sense of fairness, justice and honesty, being creative in several interest areas and having an appealingly droll sense of humour.

By creating this blog, I hope to promote an awareness of the positive traits of ASDs because there are many and they deserve to be recognized. I do not believe that we can adequately support people (in an environment that caters primarily for those without an ASD) without first having respect for them. Being aware of what people with an ASD can achieve because of the ASD rather than in spite of it, may help foster respect.

Primarily this blog is designed to offer insight for parents, teachers and health professionals and informed guidance to parents on how to support their child with an ASD.

*My understanding of Autism has moved beyond the medical diagnostic criteria since writing this post. I never really believed that it was a disorder but have come ‘full circle’ on understanding it to be a disability (according the Social Model of Disability) and a part of the neurodiversity paradigm. I encourage you to read this article by Nick Walker (a guru in the neurodiversity paradigm) for a more nuanced understanding of what Autism is. Unfortunately, my early posts may contain ableist comments. For instance, people should not have to “achieve” in order to be respected.