August 10, 2015

TO:  CAMH Review Committee

Re: Review of Gender Identity Support Services for Children at CAMH

Thank you for providing parents with a chance to give feedback regarding the Gender Identity Clinic Service for children at CAMH. We appreciate the opportunity to be heard on this important mental health service in Ontario and share our experience of the clinic.

In November of 2012 our family reached out to CAMH, and Dr Zucker, because our six year old was having serious anxiety issues.  Few of the many psychologists we met in Ottawa (since our research efforts began in 2010) felt comfortable with diagnosis and treatment for the behavioural challenges and gender questioning presented by 5-year-old, Charlie.

We travelled to Toronto in April 2012 to attend a two day assessment at CAMH that included interviews of Charlie, mom, and dad, to better understand gender questioning, and how we as parents could ‘deal with these intense feelings in our youngster, in the future’ (page 1, Assessment Report, 2013).  We asked questions like: “Are there biological, hormonal, prenatal or gestational causes for gender variance?  How do we deal constructively with the anxiety and oppositional behaviours, and the obsessive passions, and disproportionate over-reactions?”  The CAMH Assessment Report provided the diagnoses of Gender Identity Disorder, Asperger’s, Oppositional Defiance Disorder, and ADHD.

In the written report, Dr Zucker referred to my responses as a ‘narrative’, as if my contributions were contrived, and the individual reports for my partner and I are noticeably different in tone, context, and presentation.  The report for Charlie also misrepresented a great many things, the words of a child taken at face value without the benefit of context.  It took almost six months to be seen, and a year to receive the written Assessment report, which offered no direction to educators at Charlie’s school, no day to day coping strategies for family members, no additional resources for reference.  We were referred to yet another Psychiatrist in Ottawa, where we spent more money to obtain another written report – one that could be of practical help at school.  Yet again, we had to defend our desire to not put pressure on Charlie to conform to her male secondary sex characteristics, and to not interpret gender questioning as her being ‘detached from reality’ or maladaptive.  On the whole, we received little help to cope with Charlie’s experiences of bullying, her fits of rage, her transition difficulties, or her physical self-loathing.

Contrast this experience at CAMH, to that subsequently obtained at the Children’s Hospital of Eastern Ontario Gender Identity Clinic in Ottawa, where two Doctors, counsellors and Nurses, offer direct support to gender creative kids. Tests are performed, connections are made to community services like public health educators to train school boards and school administrators, travelling advice, identification changes, housing, employment and peer support groups.  MSW’s provide ongoing counselling support to our kids, with regular communication with parents.  Each child is validated, parents are provided with the most recent medical, health, parenting, and psychological reading references, questions are answered and even siblings get a chance to be heard, and know their troubles are important too.  From our perspective, CHEO treats the patients, while CAMH treats the perceived ‘disorder’.

We have worked hard and spent a great deal of time, effort and money to get to a place where Charlie’s anxiety is manageable and she can enjoy each day as the gift that it is.  She is exceptionally bright, inquisitive, precocious, vivacious, confident and irrepressible, as she always has been, but now we have a support network to rely on, and the security of knowing when we need help, we can find it quickly.  It is the sincere hope of many transgender people, and their families, that CAMH Gender Identity Clinic will soon be able to provide this level of health support to gender variant children as well.

Summary of Recommendations

As former clients of CAMH, we urge the committee to consider the following recommendations, to improve the support and treatment of gender variant children and their families:

  1. Provide a formal and substantive public rejection of desistence, and the pathologizing of personality dispositions as ‘disorders’, as a basis for treatment of gender non-conformity, and/or gender research methodology at CAMH and the Clarke Institute.
  2. Demonstrate a commitment to review client services for overt and subtle examples of institutionalized bias, misogyny, and/or unethical, gender biased, oppressive practices relating to research and services provided to a diverse population of CAMH clients.
  3. Offer improved clinical multi-disciplinary treatment for families coping with gender variance (e.g. a broader range of information gathering including data from FMRI, DNA, endocrine, biological assessments) with a refocus on parental support for behavioural challenges, and non-oppressive approaches to counselling and supporting child/parent development.
  4. Offer direct substantive and practical support by CAMH to parenting and child support groups for the gender variant (like “Around the Rainbow” program sponsored by Family Services Ottawa).

Rationale for our Recommendations:

  1. Rejecting Desistence

We ask mental health service providers to consider that there is little substantive, multidisciplinary research on gender variance, completed over the long term upon which to exclusively rely in terms of determining treatment and support.

It therefore seems unethical to recommend oppressive treatment methods like desistence – the goal of which is to subdue non conforming gender expression – on the premise that 80% of gender creative children will return to their natal identity.  Our research suggests these statistics have not been corroborated; many academics have questioned the methodology and scope of European data to provide conclusive interpretations, in such a relatively unexplored area of scientific inquiry.

Like many families in Ontario, when our loving child presented personality and behaviour challenges we felt ill-equipped to deal with, we sought professional assistance – but no local services were provided gender non conforming children and their parents, at that time.  Awareness has improved, but consistent treatment methods based on rigorous academic research, and intersectional awareness, remain elusive.  A ‘critical mass’ of understanding about gender identity by mental and health service professionals, educators, and public service, has not yet been achieved.

The CAMH Report we received from the Gender Identity Clinic offers an example of desistence as dogma, in Paragraph 1 of the Recommendations section of Dr. Zucker’s Assessment Report (2013): “because Charlie has socially transitioned, some of the therapeutic approaches used with young boys with Gender Identity Disorder  cannot be really implemented (e.g. Play dates with other boys in which the goal is to see if a boy with GID can come to feel that he has some things in common with other boys, which would strengthen a male gender identity)” (page 2/3). 

This statement implies there is a normative standard for gender, based on physiology, and the goal of treatment at CAMH is to encourage conformity.  This approach conveniently ignores the great biological and personal diversity of humanity, and the concept of free will – something Charlie has daily reminded us of since she turned four.

Further, to suggest that Charlie feels that she has nothing in common with boys, or that she hasn’t already been exposed to the company of boys at numerous play dates – ignores the fact that a) Charlie found play dates with boys to be largely a negative experience – boys were too rough and unkind, and b) Charlie loves typical ‘boy’ things like cars, heavy machinery and racing, and often finds ‘nice’ boys to play with.  Today, Charlie still has an equal number of male and female friends but she still finds boys to be annoying.  We don’t think this atypical.  Both parents feel that Charlie has the right to make her own choices as to who she plays with, unless those choices could bring harm to her or another.

The social construct of gender as a binary is the standard by which all humans are measured, and is oppressive to those who do not conform.  As grateful (older?) parents, whether or not Charlie’s personality tendencies were good or bad was relative to the circumstances, not her gender. We simply did not intuitively embrace any ideology that sought to reinforce arbitrary and paternalistic standards, wilfully ignoring all other possibilities of gender expression.  How can anyone be sure that gender variance, even that expressed by children, is NOT normative or adaptively advantageous, and where is any substantive evidence to support a desistance approach?

As parents, it is disheartening that Dr. Zucker’s contribution to the DSMIV definition was the selection of the term Gender Identity Disorder, without acknowledging the stigmatizing effect such a term could have (as it had on the Gay and Lesbian community in previous decades).   Such negatively loaded words will impact how people see themselves and how they see each other, and how mental health services choose and exclude specific supports.   These clinical definitions will impact Charlie’s future significantly.

The current WPATH standards of care, and previous DSM definitions of gender identity disorder, have been controversial because these clinical definitions lack the depth of understanding of the needs, hopes, and dreams of families who are actually experiencing what the APA/DSM only attempt to describe.  Clearly, there is a considerable ‘disconnect’ between what is real and experienced by the patients themselves, and what is perceived to be real by observers and interpreters, parents included.

Contrast a reparative style of treatment, where non binary is perceived as maladaptive, to the less invasive practices of some First Nations, like the Anishnahabe, who value two-spirited members as gifted leaders, and who view childhood as a learning process for adults too.  Ojibwe elders shared with us the wisdom of accepting and respecting all spirit expression, including the duality of a concept of ‘anima’ and ‘animus’, as a part of natural diversity.  The historical context of ancient precedent of two-spirit in cultures all over the world (India, Mexico, Hawaii), also helped us to gain perspective.

Dr. Zucker’s recommendations also said that: “The parents can certainly help here by indicating to Charlie that the decision for him to live as a girl can be reversed, but I don’t think it would be particularly productive at this point to impose a destransition – this could only happen if the parents and Charlie were willing to consider it.” (Page 2/3)

We would not be willing to consider oppressing our child, because Charlie continues to have the opportunity to explore being a boy, including the first five years of her life that we socialized her as a boy.  Like most stunned parents of gender non-conforming kids, we were suspicious of the expression of Charlie’s female characteristics when they first began at age 2, and so we made decisions collaboratively, with an agnostic/non-judgemental/lighthearted approach, while we learned, always unsure of our next step.

Although we eventually ‘allowed’ her to freely express herself, it took a while before we could follow her requests to change her pronoun from ‘he’ to ‘she’.  During that time, we resisted Charlie’s demands to fully transition socially to a girl (hair growth, dresses, pierced ears), while we sought information, help, and a new neighbourhood.  We dressed her as neutrally as she would agree to, for each occasion.  Even today, we remind Charlie that she can always choose to remain a boy, though we often say this in vain hope during the daily struggle to brush the birds nest from her ‘flowing locks’ of hair, or put her pierced earrings back in, without her feeling any of it.  The impossible tasks, of course, take a little longer.

Both parents play, in equal measure and turn, games like cars, ‘AstroNOT!’, ‘Bed-knobs and broomsticks’, Lego Friends, racing, ‘Chez Charlie’s Bistro’ (Chopped!), and Forza Horizon 2, with wild abandon and joy.  The best four years of my life, I spent at home with Charlie where we had crazy fun times, filled with reading, adventure, singing, exploration, dancing, cooking, and learning.

Our primary parental focus has been to ensure Charlie enjoys her childhood while it lasts – no matter what her gender expression may be.  And yet the CAMH Assessment report seems to presume that Charlie needs to spend more time with dad, and that I (mother) made the decisions about Charlie’s gender expression, ‘on her own’, (Page 2/3 of Assessment Report, 2013), relying exclusively on ‘internet’ (Ibid) , as if somehow (?) I had influenced Charlie to be female, based on gossip.  How I accomplished this amazing feat is baffling, since I can rarely claim similar influence in getting Charlie to brush her teeth or flush the toilet.

The suggestion that there is any maternal responsibility for gender ‘dysphoria’ in offspring has more in common with Freudian stereotypes of female hysteria, than actual reality.  No less gentle was the advice we received from friends and neighbours:  to restrict Charlie from being a girl to weekends, privately, at home, where nobody else can see.  In both ideologies the female is perceived as undesirable, and its expression shamed and rebuked, ostensibly to avoid worse censure and exclusion.  We did not agree that hiding our child’s expression of self, or prohibiting our kids from being themselves every day, was ethical or responsible parenting, and we paid no homage to moral rectitude.

Admittedly, we are not perfect and as with other parents, we have made some mistakes; but over time we discovered that neither of us was willing to restrict our five year old to assigned biological gender roles – with no substantive reasoning to justify this veiled repression, other than conforming to traditional expectations.   We ask CAMH to reflect seriously on this as well.

Treatment options for gender questioning children at CAMH need change, with a view to deep and meaningful awareness of gender bias, and sincere understanding with focussed resources to gender fluid, binary transitioning kids, and their families.  The reputation of the entire institute is in peril, if even one child slips through the cracks of an outdated, unresponsive CAMH foundation.

2.Review for institutionalized bias

From age two, Charlie preferred playing cars and cats, and dress up. Favourite movie (watched repeatedly) was Mamma Mia because Disney’s “Cars” movie was too ‘violent’, said Charlie.  Her favourite colour: pink, favourite TV shows “Mighty Machines”, “How it’s Made” and “Mythbusters”; favourite ‘shop for’ at Value Village: heels festooned with glitter and Hotwheels.

We did not label Charlie’s interests, preferences or toy choices as ‘boy’ or ‘girl’; we just accepted and followed, encouraging leadership, exploration and discovery.  Because of the many different preferences Charlie expressed over time, we became more conscious of our own gender bias, and the fact that my partner and I had taken on traditional gender roles in the family.   We became more careful with our jokes, our judgements, and the amount of information we shared with our youngest – so as to appropriately inform but not influence her.  We found ourselves (half sister Melanie included) trying to explain to a profoundly gifted child, how and why media representations of people lacked truth and authenticity, especially when it came to depictions of gender.  Questions like: ‘why aren’t truck shirts made in pink? Why can’t I sit to pee?;  later became assertions like” ‘boys and girls can wear nail polish and jewellery, can like cars and racing, and are ‘allowed’ to wear the colour pink’ and ‘I can SO dress like Beyonce!’.  Sometimes these topics inevitably became our dinner table conversation – but most often, gender was rarely a noticeable part of our daily life.

We are attached parents who spend time with Charlie, we notice what she notices, answer her questions with honesty, and limit our responses so as not to ‘over-load’ an inquisitive and precocious child.  We let Charlie lead us, constantly aware that she may not be emotionally ready for some information, knowing there will be plenty of opportunities to explain further when the questions come up again, preferably many years hence.  Our careful consideration is often thwarted by Charlie’s resourcefulness, language abilities, flair for drama, and technological savvy.

The conundrum we face as a family is that no matter what we do to support our gender creative kid, we will be criticized for being at once too neglectful and too overprotective, permissive and strict, indulgent and undisciplined, hyper vigilant and not vigilant enough.  Our children endure hostility, and work to dispel myths as we do, in classrooms, sports fields, hospitals and shopping malls, every single day.  Together we create ‘safe files’, and negotiate each and every encounter with public services from obtaining health cards, to school registration, to boy/girl scouts to passports, with considerably more patience and grace than we feel capable of.

The great irony of the public controversy over gender identity is that the discussion too often remains focussed on the phallus, and whether or not someone possesses one, instead of the brain, and whether or not someone utilizes one.  Perhaps this is Freud’s greatest legacy to modern interpretations of gender and sexuality – as the outdated approach lays bare centuries of gender bias for our consideration. Gloria Steinem said it best: “We have begun to raise our daughters more like sons, but few have the courage to raise our sons more like our daughters.”

Charlie has absolutely no discomfort with being a girlish-boy …so why should we?  It seems that the rest of society, and its institutions, are dysphoric about her expression of her female self.  If you think it impossible that CAMH could not be aware of gender bias, I ask you to consider that male pronouns were used for Charlie for the two days of oral interviews, and in all pages of the written Assessment Report.  Why would young people deserve less respect offered adult people – to be addressed as they prefer? CAMH needs to perform a review to check for institutionalized gender bias, and create effective response mechanisms that recognize the intersection of diverse needs of clients.

3. Improved, multi-disciplinary approach to treatment and research

The consequences of dogmatic approaches to mental health treatment for families like ours, is that the limited help offered by institutions – is no help at all.  When mental health services could be obtained for our delightfully gregarious child, the focus was almost exclusively on gender identity, ignoring the significant behavioural challenges of Aspergers, ODD, ADHD, depression and anxiety.  For many families like ours, no meaningful supports are offered to cope with the daily struggle of thriving in a binary society with multiple exceptionalities.

We feel the weight of yet one more agent of government unwilling to address their own institutionalized bias regarding gender – and who malign those who request deeper, more responsive and meaningful introspection.  We share their burden, begging for acknowledgement, validation, and understanding from those who have decision making power over our lives, and the privilege to ignore whatever suits their research aim.

Gender non conforming children are too often dismissed as ‘confused’, parents are condemned, mothers as ‘over-involved’ or ‘domineering’, dads as ‘emasculated’, and these stereotypes perpetuate public and private ridicule, which puts the lives of our kids at risk.  Of all the places we thought we could reasonably expect refuge from prejudice, it was CAMH.

Finally, the CAMH report does not address legitimate questions about biological, congenital, gestational research, or the current evidence available from disciplines like FMRI brain research or DNA mapping.  No base line tests of blood or urine, no medical history sought, just interviews of parents and child were used to determine that Charlie had a disorder, because she wants to be a girl.

4.Direct sponsorship of Parent/Child support groups

After our visit to CAMH in spring of 2013 our family returned to Ottawa and joined a parent support group at the city’s Family Services of Ottawa (FSO).   We are proud to be among five families, and one FSO staffer, who began a group that would connect parents with parents, and kids with kids, and parents to their kids.  Families need a place to share strategies, feelings and, resources, to deal with the frustration, and lack of services for their gender questioning kids, and their own private struggles in times of distress. Century old FSO stepped up to the plate.

Whether families were dealing with divorce, or Children’s Aid taking gender variant kids from supportive parents,  whether negotiating washroom use for non conforming kids at school, or facing bullies on real and cyber playgrounds, thousands of families across Ontario have stories to tell, if our health care providers, our communities, will only listen.

Today FSO’s ‘Around the Rainbow’ family support group has grown to over 100 families, drawing more locals to share resources and experiences with fellow questing parents, those who best understand the unique situations and challenges associated with gender non conformity.  The kids have made lifelong friends; the parents have found support that could not be obtained anywhere else.  Best of all, there is nothing to prove, no goal, objective, or driving hypothesis that governs the direction of the support group, other than a humble aim of mutual respect, and empathy.

With the support of the Gender Identity clinic at CHEO, and independent groups like Gender Mosaic, PFLAG, Carleton University’s Gender and Sexuality Resource Centre, families in Ottawa have found wise guidance, understanding, and respect.  People from all backgrounds, created the forum they needed, so they could learn about the experience of gender.  Somehow the congregation of wisdom collected by all these people is the healing salve.   Generations coming together to support those who need it most – and CAMH could play a vital role by becoming part of the solution, sponsoring this type of support across Ontario.

Conclusion

It’s time for CAMH to change … and to publicly be seen to be changing. We think a new direction in treatment and service should be reflected in the Clinic’s name, to send a powerful signal that CAMH is providing support, in new directions, for everyone.  Change with the times, from a “Gender Identity Disorder Clinic” to a “Gender Diversity Clinic”

Families we have met suggest that since 2011, there is growing evidence of progress being made in the adult gender identity clinic, but many lament the fact that for the last several decades CAMH has been behind the times in its understanding and treatment of persons with gender variance, especially children.   The track record of CAMH and the Clarke Institute has not been stellar, perceived by many as disrespectful, unprofessional, condescending, and paternalistic.

As Dr. Temple Grandin has said: “People are always looking for the single magic bullet that will change everything.  There is no single magic bullet.”  Like ASD, gender diversity is a spectrum that requires no fixing, no magic bullet.  All our kids need, is a change in everyone else’s perspective.

Dr. Grandin and our Charlie share many gifts including sensory processing sensitivity.  Though kids like Charlie may try to disguise their real self to fit social norms, and find it impossible to sustain, they are highly sensitive people, deeply compassionate, unselfish, and generous.  Often their own biggest critics, they will sacrifice themselves in mortal terror of public humiliation; too many push themselves too hard, only to beat themselves up repeatedly for perceived failures, criticizing themselves in ways they would never judge their best friends.  Sometimes they become adult people with no boundaries, devoured by the emotions of others, and some become desperate, seeking peace in negative ways.  Too often their coping mechanism is to endlessly over think and analyze, instead of having confidence in their own self.  Too often their desperation becomes a parents’ worst nightmare – a 43% attempted suicide rate.

Help us to help them, by broadening the scope and availability of support at CAMH.  Act quickly to provide new leadership, and implement programming that will change the suicide rate for (gender non conforming) children and youth, and improve understanding, treatment and research about gender variance.

As our kids tell us, and as Leelah Alcorn told the world, do your part to: ‘Fix society’.