John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.
Since my early adolescent years I have been a reluctant guinea pig for the psychiatric industry. I have been repeatedly misdiagnosed, overmedicated, poked and prodded. I’ve had Bipolar Disorder, Generalized Anxiety Disorder, Major Depressive Disorder, etc… I’ve been on every sedative, stimulant, anti-psychotic and anti-depressant on the market. I’ve endured unbearable side-effects and withdrawal symptoms. I’ve taken drugs to treat the side-effects of drugs that I was taking to treat the side-effects of other drugs! More than once, I’ve wanted to beat a shrink to a bloody pulp, but was too comatose to do so. After a few years of seeing these quacks, I went from an admittedly eccentric kid to the drooling, incoherent lovechild of Charlie Sheen and Anna Nicole Smith.
How exactly did this happen? How did one doctor after another diagnose me with such a wide variety of mental illnesses? Several decades ago a diagnosis of Bipolar Disorder, then called Manic-Depression, typically resulted in commitment to an institution. Now Bipolar Disorder is often nothing more than a trendy label, worn with pride by actors, artists and the like… ” I’m into sculpture and Kabbalah, I smoke American Spirits and I’m Bipolar.” Give me a break!
I was once seeing a psychiatrist who eyed me suspiciously for signs of mania during my every visit. I finally asked him, “How many times do you have to see me before you realize I’m always like this?”
“Well,” he said, “Maybe you’re the kind of bipolar patient who is always manic and never depressed.”
“Are you saying I’m unipolar? Is that actually a diagnosis? Maybe I’m just hyper…”
As many of you know, I’m autistic. This diagnosis is unquestionably valid and has radically altered the course of my life and the way I view myself. How did I go through a decade of constant psychiatric treatment without anyone catching on? Well, for starters, there are a limited few pharmaceuticals approved for the treatment of autism.. There are literally dozens of medications used to treat the symptoms of Bipolar Disorder. You do the math…
This rampant tendency towards over diagnosis belittles the struggles of people who actually have these disorders, and instead of treating symptoms, often creates them in individuals given extremely powerful and dangerous drugs without due cause. I never had an anxiety disorder until I became dependent on anti-anxiety meds called benzodiazepines, which were originally prescribed to me to treat the agonizing side-effects of an anti-psychotic. I guarantee that anyone prescribed escalating doses of sedatives will develop some major issues. But the more issues you have, the more issues you will seek treatment for. The psychiatric industry doesn’t stand to make much money from a patient without psychological complaints.
An equal but opposite problem is caused when perfectly valid treatments are withheld from patients for irrational reasons. Most doctors receive the majority of their pharmaceutical knowledge from representatives of the pharmaceutical companies. Also, many doctors receive kickbacks from big pharma for prescribing their meds. Because of this, tried and true treatment options are passed over in favor of “the next big thing.” However, these new pharmaceuticals have not yet been proven to be any more effective than their more affordable predecessors, if, indeed, they are any different at all. The pharmaceutical industry is a lot like Hollywood; the latest blockbuster is usually just a sequel or remake. Drugs that have worked for decades are often tweaked, reformulated, renamed and presented to the public as something revolutionary (this is the case with a myriad of extended release medications, whose instant release counterparts are often just as effective for a fraction of the cost).
When seeing a shrink, it is important to check out the office swag; if the clock on the wall, the paperweight on the desk, and the pen in the doctor’s hand are all labeled with the name of a certain drug, chances are you will find that name on you prescription. Sadly enough, that doctor probably found the same name on their ticket for an Alaskan cruise.
If you find any of this alarming, you probably haven’t been lobotomized by the psychiatric industry or are currently too overmedicated and uniformed to know the difference. If you are seeing a psychiatrist or plan to do so, please, save yourself money and heartache; do your research! No one should go through the hellish and unnecessary experience that I did. Are you sure your diagnosis is correct? Are you taking the most effective, affordable, and time-tested medications?
Ask plenty of questions. Make suggestions. No patient should ever be afraid of their doctor. Remember, your doctor works for you!
I am by no means an opponent of pharmaceutical intervention, and have received enormous benefit from the right medications. Unfortunately, the road to psychotropic success was unnecessarily long and painful.
It seems the psychiatric industry suffers from some nasty symptoms, including reckless disregard for the safety of others, lying, lack of remorse, and consistent irresponsibility. According to the DSM-IV, these symptoms indicate a diagnosis of Antisocial Personality Disorder. Now, I’m not a doctor (I just play one in real life) so I can only suggest that the psychiatric industry be given a diagnosis of APD and prescribed… a dose of their own medicine.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Over 700 parents of teenagers with Asperger’s Disorder have registered on MyAutismTeam.com – a site where parents of children on the autism spectrum connect, share recommendations of local providers, and share tips with each other. That’s about 20% of all parents on the site. These parents have spent years building up their “autism teams” – all of the providers needed to help their children develop and thrive. They have endured a lot of “trial and error” to find what therapies (and which providers) work best for their teens. We looked at all the parents of children with Asperger’s Disorder on MyAutismTeam, narrowed it down to those with teens on the spectrum, and read through their stories and teams. Summarized below are five of the more common, and five more unique, types of providers on these parents’ teams.
5 Common Team Members for Teens with Asperger’s
5. Pediatrician – Every child needs one, but finding one with some understanding of autism and sensitivity to the needs of a child on the spectrum is important. Autism was not nearly as recognized 10 years ago (when many of these parents were first seeking answers) as it is now, so some parents have had to “break in” their pediatricians over the years – sticking to their guns and insisting on a referral for a diagnosis when the pediatrician has told them something like, “Speech delays are normal for a boy of his age”. You may not find a pediatrician with formal training in autism, but it’s helpful to find those that regularly see kids on the spectrum. If you need help, there are over 670 pediatricians marked “Autism-Yes” on MyAutismTeam (meaning another parent or our partner, Autism Speaks, has indicated that the pediatrician is experienced working with children on the spectrum.) If you can recommend a fabulous pediatrician, please find them on MyAutismTeam and add them to your team. A word from you can save another parent months of “trial and error.”
4. Psychiatrist / Psychologist – For initial and ongoing evaluations that not only help guide the types of therapies you pursue for your child, but also help in securing necessary services from schools and insurance companies. A psychiatrist has a medical degree and can prescribe medications. A psychologist has a doctoral-level degree in psychology. (Note: Many parents report seeing a Neurologist as well.)
3. Dentists – It’s hard enough to bring a neurotypical child to the dentist every six months, but to a child with Asperger’s and sensory sensitivity, a trip to the dentist can be daunting (even for a teen). That’s probably why so many parents list a dentist as part of their Autism Teams. Finding a dentist that is sensitive to those needs and skilled at working around them is a big deal. Some parents seek out dentists that put their patients under anesthesia to make the process go more smoothly. Check out Autism Speak’s Dental Tool Kit for more tips on making visits to the dentist office less stressful and more productive.
2. Early Intervention Therapists – When asked “What therapies worked best for your child” more parents respond that ABA, occupational, social integration and speech therapy were the most effective in helping their children make progress. They seek these therapies out through their IEPs at school, privately if they can afford them, and through other local resources where they exist. One of the most common challenges parents discuss on the site is helping their teens build social skills and relationships with other kids their age. BethComptonMathie ofMorristown,Tennessee explains, “My son used to have friends but the older he gets, the harder it gets. [He] is focused on video games.” She has tried social classes over the summer and her son now works with a psychologist who visits the school each week from the same summer program. Other parents have reported that occupational therapists have vastly improved their child’s handwriting.
1. Respite Care - Every parent needs a break of some sort. A time to run an errand , do something for themselves, or just recuperate. Many parents list the local chapters of Easter Seals as an invaluable resource for finding respite care and preserving their personal sanity. As one veteran mom responded on lessons she’s learned, “I wish I knew how important it was that I make myself a priority. It’s the little things that I carve out in MY life to self-nurture that give me the strength to live, laugh and love more deeply today and be the best parent I can be.”
5 More Unique Providers You May Not Have Considered
5. Martial Arts Instructors – Martial arts from an understanding instructor can promote focus, discipline, self-confidence, and physical stamina. Numerous parents on MyAutismTeam start their child in martial arts classes at age 5 or 6. In some instances it’s an activity that dads do with their children.
4. Horseback Riding Therapy – Occupational therapy through horseback riding can be a wonderful experience for kids with special needs. CaddysLady of Vancouver Washington lists two such providers on her autism team.
3. Attorneys – Sometimes attorneys specializing in special education law have been helpful for parents struggling to get the appropriate services from their school district or in securing coverage of key therapies from insurance companies. One New Jersey mother of a 20 year old with Asperger’s has an attorney to help secure the things the services that come after the teenage years. “After 2 years of fighting for Transitional Education, and winning in Court, my son has almost completed his first 30 days in a specialized school.”
2. Piano Lessons – Quite a few parents have piano teachers on their autism teams. I think a mother of 5 year-old (not a teenager) with Asperger’s, Sharon Esch ofAlbuquerque,New Mexico, sums it up perfectly. “Music seems to be a great therapy for [my son], giving him an opportunity to work on fine motor skills in a way that doesn’t seem like work. Also, I think he enjoys the immediate response of hearing music when he plays, something he controls himself.”
1. Barbers – Like the dentists, every child needs a barber, and every child on the spectrum needs a barber who “gets it.” For a particularly inspired and touching account of the bond between one teen turned adult on the spectrum and his barber read Laura Shumaker’s brilliant piece, “Mentor, Helper Friend.”
Who’s On Your Team?
You can see all of the parents of children with Asperger’s Disorder on MyAutismTeam and read through their stories and see their teams. You can also post on their walls and ask them questions. If you have fabulous local providers you can recommend to other parents just starting out on this journey, we hope you’ll join MyAutismTeam and share your wisdom!
Posted byEric Peacock, GM of MyAutismTeam