Interview with Mrs. Hilfiger on Neurodiversity
Autism Speaks Board Member Dee Ocleppo Hilfiger Discusses Spectrum Disorders
By Jordan Schaul | HuffPost | October 10, 2016 | Updated 10/28/2021
In a recent correspondence with the model, fashion designer and Autism Speaks board member Dee Ocleppo Hilfiger, I mentioned that I was eager to discuss autism awareness and spectrum disorders and get her perspective. Among public figures, Mrs. Hilfiger is a staunch advocate for the neurodiverse.
“Tolerance, patience, compassion, acceptance, and love is what is needed on all fronts [when it comes to autism].” - Dee Ocleppo
I have generally learned a lot more about life on the spectrum from moms of children afflicted than from clinicians who treat people on the spectrum. Diagnosing and treating high-functioning autistics requires as much formal training as experience seeing clients.
People with autism may lack cognitive empathy but have plenty of emotional empathy. Cognitive empathy allows us to navigate the superficial aspects of the social landscape whereas emotional empathy allows us to feel the emotions of others more deeply.
Accepting neurodiversity and particularly a tolerance for the broad spectrum of neurodevelopmental conditions known as Autism Spectrum Disorders (DSM-5), is being taken far more seriously than when the Asperger’s syndrome was first recognized.
Interview with Mrs. Hilfiger: I reached out to Mrs. Hilfiger because public figures, now more than ever, are helpful in publicizing concerns and normalizing understanding surrounding neurodiversity. In sharing her experiences, Dee 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 director/trustee of Autism Speaks, Dee serves along with Tommy as an ambassador for 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.
Part of being advocates means that she and Tommy stay apprised of the latest research findings in autism research.
In response to my question concerning undertrained clinicians, she said because the diagnostic criteria have changed and high-functioning cases (aka Asperger’s Syndrome) still represent somewhat newly described entities to the broader medical community, many therapists and other practitioners are still learning and may not be current. Dee also reassured me that there is no paucity of research into 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 also emphasized that those deemed to be high-functioning or moderately-functioning have achieved great success, and hence there is growing opposition to the notion of finding a cure.
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 and doing great. 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.
The Hilfiger’s have a big and blended family. Kathleen who is just a year younger than Alex lives in the states. The Hilfigers 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!’ ”
As both a parent of multiple children on the spectrum and a friend of many parents of children on the spectrum, Mrs. Hilfiger is exceptionally poised to advocate for autism awareness. For someone who travels extensively and is obliged to attend many social and professional engagements, she is particularly accessible. She is also very much in touch with the needs of the global community that is becoming increasingly autism aware. Dee is also cognizant that much still needs to be learned.
People relate to public figures, and whether they represent people on the spectrum or not, their power and clout, and personal experience make for an unrivaled combination in the area of advocacy and activism. Dee agrees that it can’t hurt for more celebrities afflicted or celebrity parents of children afflicted to come out of the “autism closet”.
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.
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 a testament to surviving parenthood for those with neurotypical children. She 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 histories and current status.
When she learned that Sebastian was autistic, she said, “It wasn’t her first ‘rodeo’ .“ She meant this both figuratively and literally.
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 a 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.
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.”