This article has also appeared on the Huffington Post website:
In a recent correspondence with my friend, former model, fashion designer and Autism Speaks board member Dee Ocleppo Hilfiger, I mentioned that I was eager to talk to her about autism awareness. Mrs. Hilfiger is a staunch advocate among public figures for people on the Spectrum and her mantra is as follows:
“Tolerance, patience, compassion, acceptance, and love is what is needed on all fronts [when it comes to autism].”
I have generally learned a lot more about life on the Spectrum from moms of children afflicted, including some I’ve dated, than from clinicians who treat autistic people. This may induce smiles and smirks among the readership, and it is sad, but very true. When a clinician says they have treated a population of high-functioning autistics, do more research into their training. Don’t take their word for it.
Briefly, autistics may have plenty of compassion, but they completely lack empathy, whereas sociopaths (those with Antisocial Personality Disorder), in comparison, completely lack compassion. However, sociopaths can apparently turn empathy on and off. Empathy is more about perceiving something from another’s perspective, whereas compassion is about caring. These are two different things and they are not interchangeable in usage.
Being empathetic allows a sociopath to con and manipulate people, whereas lacking empathy precludes autistics from the ability to see something from another’s view point. Please ponder this before you dismiss how challenging a lack of perception can be for someone who otherwise seems neurotypical or “normal”.
I generated this very simplistic comparative construct in an effort to explain how this one ”limiting” diagnostic parameter can confer high-functioning autistics such difficulty in life (e.g. professional and academic and any interpersonal relations). Unfortunately, the notion of completely lacking empathy is unappreciated by some on the Spectrum. Assuming other adult autistics read this, it wouldn’t be the first time I offended someone, I assure you.
I have discovered that families, friends and high-functioning autistics, themselves, don’t like this fact, but it is largely because they don’t understand what empathy is in the first place. Contrary to what many, if not most people think, “empathy” is not synonymous with “sympathy” or “compassion”. Rather, it means something entirely different. Even clinicians treating those with Asperger’s or high-functioning autism fail to make this distinction.
This basic paradigm, has support from two distinguished clinicians in both psychiatry and cognitive psychology. Both Kathy Marshack, PhD and Ramzi Kiriakos, MD, PhD, a UCLA professor of psychiatry and psychology recognize this distinction in their respective practices.
Sadly, accepting neurodiversity and particularly a tolerance for the broad spectrum of neurodevelopmental conditions known as Autism Spectrum Disorders, as published in 2013 in the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), is not a serious concern.
In fact, when I first learned of my diagnosis, I was known to wear a shirt that reads, “I’m Autistic, What’s Your Excuse?” I have a very sarcastic sense of humor. Dee would say her oldest son Alex, who is on the Spectrum, has a great sense of humor. For me, wearing the shirt served as a bit of a ‘tongue-in-cheek’ public service announcement, if not a badge of honor for surviving tumultuous times.
I’m 6’0 and 190 pounds, and used to train grizzly bears. Embarrassingly so, as a young adult, I was also once arrested for fighting, so I’m not exactly fragile or timid. But the misdemeanor was a pivotal and isolated incident that lent itself to some surprising self-discovery. I realized then that my emotional reactivity was not always commensurate with the inciting stimulus and I had a proclivity for a short fuse.
I had been erroneously diagnosed with bipolar disorder among other things. But as recent as two years ago, I found some relief from a life full of seemingly excessive trials and tribulations. I had seen a physician for the treatment of Attention Deficit Disorder and he suggested that I might also be autistic or have Asperger’s Syndrome. Asperger’s is not a mental health issue, but it can certainly lead to co-morbid mental health conditions like anxiety and depression and sometimes presents with or erroneously as ADHD.
Recently, I was confronted with a difficult experience where, to my dismay, I felt I was bullied and the recipient of abusive language from an ignorant, yet prominent female colleague of notability and celebrity. While some in the high-functioning autism community consider the stigma associated with the neurodevelopmental condition to have lessened in recent years, I think tolerance for neurodivergence is still quite low.
Interview with Mrs. Hilfiger: So, I reached out to Mrs. Hilfiger because you never know when a well-connected friend with the courage to publicize her own family’s struggles, can provide some refreshing perspectives. Dee is exceptionally gifted with emotional intelligence. She also confesses that both she and Tommy have developed a great bit of patience, which she concedes they have as a result of raising three kids on the Spectrum.
In her role as a board of trustee/director of Autism Speaks, Dee serves along with Tommy as an ambassador for both people afflicted with autism and parents of autistic children.
“Autism Speaks, through a series of mergers, has combined organizations that [fund] peer reviewed research into genetic causes, [champion] alternative theories and therapies, and [advocate] for individuals with autism.” – Wikipedia.
Although heavily involved in advocacy, and targeting a lay audience, she and Tommy are regularly made apprised of the latest research findings.
I suggested that perhaps some clinicians are “out of touch” with autism. She said it may be because the diagnostic criteria has changed and high-functioning cases and/or Asperger’s Syndrome represent somewhat newly described entities to the broader medical community. With that said, Dee has also reassured me that there is no paucity of research in to treatment and cures and coping strategies both in terms of behavioral adaptation and modification. In addition, there are now pharmacological therapies and other clinical care modalities that operate on neural pathways implicated in autism spectrum disorders. Autism Speaks is partly responsible for this progress.
Dee and I discussed that some people on the Spectrum, particularly those that are high-functioning or moderately-functioning, have achieved great success, and thus are opposed to the notion of finding a cure for Autism.
When I asked about her kids, Mrs. Hilfiger reported that her oldest son Alex is 22 and extremely happy living in Europe. Her youngest of the three sons, Sebastian (age 6), was also diagnosed with an Autism Spectrum Disorder. She said that she sometimes regrets that Alex did not get the same kind of early intervention that Sebastian will undoubtedly benefit from.
Dee points out that although controversial, the experience of people who are nonverbal may be so difficult that to challenge parents of these lower-functioning individuals who advocate for a cure would be unfair. In these cases, the financial and emotional burden of caring for an autistic relative can be particularly devastating.
Dee and Tommy have a big and blended family. Kathleen who is just a year younger than Alex lives in the states. The Hilfiger’s share that their blended family of seven children largely functions like any family, neurotypical or not, and that Alex and Kathleen are sometimes at odds.
“Naively, we thought, ‘They’ll get along great, they’ll be best friends,’ ” says Dee, lounging on a sofa with her husband a few hours before the grand opening of his L.A. flagship store in February. “But in fact …” She looks to him for the words, and he finishes her sentence with a wry chuckle: “They get on each other’s nerves.” (Parade Magazine, 2013)
“We should have known, since both have a condition that makes social interaction difficult,” says Dee. “They often have zero patience for one another—but then they don’t really have any patience for anything, period,” Tommy adds. “Alex will touch Kathy’s arm, and she’ll draw back and yell, ‘Don’t touch me!’ ”
Selfishly, I’m more concerned that cognitive therapists and psychopharmacologists are often perplexed with “autism light”, as it presents in adults and have difficulty making a diagnosis. In the course of our recent conversation, Dee taught me to be a little more forgiving because autism can be such a profoundly debilitating condition as well as something challenging and pervasive. It can also be quite tolerable and permit a good quality of life, especially for high functioning people, and particularly for those who receive early intervention. Indeed, we agreed that autism, is a complicated deficit if you consider it as a spectrum of disorders.
Mrs. Hilfiger is very poised to advocate for autism awareness given her roles as both a parent and friend of parents of children on the Spectrum. She travels extensively, but is quite accessible. In addition, she has a remarkable amount of experiential and practical expertise with autism, not to mention an appreciation for reaching a lay demographic of people affected by the disorder. Although Dee has certainly “lived autism” first-hand as a parent, I think because she is inundated with similar stories with such frequency, she is particularly in touch with the needs of the global community that is becoming increasingly autism aware. She is also cognizant that much still needs to be learned. Dee is humble about what she knows, but she is a fantastic ambassador for a really important cause that has touched both our lives very closely.
As a biomedical scientist, I realize the limitations of some peer-review contributions to helping caregivers in the immediate future. It is also healthcare issue that can be convoluted and imprecise at the patient-doctor interface.
We certainly need more data and more research investigations into various facets of ASD’s and co-morbid pathologies, but we also need more people to share their stories, and high profile people at that.
Dan Aykroyd and Jerry Seinfeld come to mind as public figures who have graciously shared their stories about definitive and tentative autism diagnoses. Dee agrees that it can’t hurt for more celebrities afflicted or celebrity parents of children afflicted to come out of the “autism closet”.
As much as, I’d like to think that I’m a celebrity, I realize that my following of exotic animal trainers and zoo professionals limits my reach. Seriously though, when I advocate and raise awareness for both personal reasons and for others afflicted, I find that celebrity experiences break stigmatized beliefs and stereotypes quite quickly.
People relate to public figures, and whether they are typical representations of people on the Spectrum or not, the power and clout of notability is unrivaled. Dee is a public figure. But Dee, as I mentioned, is not only known for her grounded warmth and charm, but for her aptitude and appreciation for the autistic experience as she sees it herself.
Mrs. Hilfiger is a refreshing voice on the topic because she is exceedingly enlightened about it. She and Tommy also share a balanced attitude toward the developmental condition as parents.
As Dee retrospectively compared her parenting experiences with two boys of her own and a stepdaughter, it was tremendously reassuring to hear her perspective, if not therapeutic for me.
I mentioned above that if you meet one child on the Spectrum, you may think you have met them all. As Dee said, “This couldn’t be further from the truth.” Mrs. Hilfiger is also a testament to surviving parenthood for those with neurotypical children. And she has four of them! Dee says that parenting kids off the Spectrum has plenty of challenges of its own, but certainly admits that she and Tommy have cultivated a tremendous amount of patience parenting seven children regardless of their developmental status.
When she learned that Sebastian was autistic, she said, “It wasn’t her first ‘rodeo’ .“ She meant this both figuratively and literally. When I first mentioned my late diagnosis to Dee, she kind of took pause, as her children were diagnosed fairly early. She encourages afflicted adults with a latent diagnosis to be tolerant in their own right and not get frustrated as I have with a discovery of autism at 40.
It gives me great confidence in Autism Speaks, that its Board of Trustees picked Dee and Tommy to serve their organization. The most prominent autism advocacy organization in the US was founded 11 years ago by General Electric’s Vice Chairman Bob Wright and his late wife Suzanne. This was only a year after their grandson was diagnosed on the Spectrum. No one can doubt that Autism Speaks has made positive impacts on awareness and advocacy for both those with a voice and those who can’t speak for themselves.
As for Dee and Tommy, they seem to take things in stride. As a mom, Dee reminded me that as much of struggle it can be to raise children with autism or be one yourself, there are worse conditions out there to be stricken with than high-functioning autism. “Yes, she said some of her friends’ children are severely compromised as young people with ASD, but hopefully through the work of Autism Speaks and other organizations, there will be a brighter future for everyone on the Spectrum.
Mrs. Hilfiger has a great deal of empathy and compassion for other parents. She said, “Parents approach her all the time to tell their stories. They share joyous experiences and commiserate about some of the less enjoyable incidents. It is part of life,” she says.
Most avoid discussing stigmatized topics at all costs. So when a really high-profile public figure used to life under a microscope shares the less glamorous aspects of the human experience publicly, it is worth sharing. We need voices like those of the Hilfigers. Autism can be a messy and high-maintenance condition and in my opinion, as someone afflicted it is such a pervasive condition, that it is hard to relate if you have not lived with it or cared for someone afflicted.
To compare, I have asthma. A pulmonologist or immunologist need not have asthma themselves to appreciate what if feels like to experience a shortness of breath. But when every neurotransmission, if you will, is tainted by autism, it affects how you perceive and react to the world and how others perceive and react to you.
Fortunately, Autism Speaks is committed to making sure healthcare providers are trained to deal with neurodivergence. It would also help greatly if everyone just practiced tolerance.
My friend and noted entertainment executive John Ferriter, shared the following quote:
“Always remember that life is a broken play. Improvise, adapt, accept and change and remember if there is no solution to something then there really isn’t a problem to begin with.”
Dr. Jordan Carlton Schaul can be reached at his verified public Facebook page. Jordan is an American wildlife conservationist, animal trainer and popular culture contributor to a number of publications.