Our autism journey began during a routine checkup when our son Miles was 3 ½ years old.
When the exam was over, and Miles looked good and healthy, the doctor asked if we had any concerns. My wife asked a simple question about Miles’ speech development. Yes, Miles spoke and answered questions, but he never asked questions and most people didn’t understand him. There was never conversational speech. She mentioned his uncanny ability to mimic and recite entire episodes of his favorite shows, unexplained meltdowns in the car and on shopping trips, and his amazing talent of writing and drawing in the exact fonts of original logos he saw.
The doctor mentioned “the spectrum” during the appointment and recommended testing through the county. My wife asked, “What spectrum?”
My wife didn’t leave the appointment with pamphlets, guides or referrals. She left stunned with the realization that there were medical terms for some of Miles’ behaviors. She had a million questions and no answers.
Within days, we Googled everything we could on Autism Spectrum Disorder (ASD) and asked many questions. Unhappy with the county testing experience, my wife was certain we should find specialists to evaluate Miles before letting the school district make decisions on his education. We are forever grateful for recommendations to see Dr. Christine Barry and Dr. Nancy Roizen at University Hospitals for initial testing and diagnosis.
Years of Applied Behavior Analysis (ABA) therapy, physical therapy (fine motor), intensive private speech therapy, in addition to school programs during preschool and elementary school, followed. These were intense, stressful years for Miles and our entire family, but critical components to his development and success in a typical school setting, which was our goal for him.
We celebrated progress, agonized over setbacks – Miles stopped walking down stairs, wouldn’t go on playground equipment, became a very restrictive eater, had severe meltdowns if we drove on certain roads, developed unexplained rashes and sensitivities to fabrics and odors, for example.
For me, once I learned of my son’s diagnosis, I quietly discussed it with some close friends. It’s not something that you share with everyone as you try to face the tidal wave of emotions and worries that wake you in the middle of the night. But a friend told me an encouraging story about someone she knew with a 6-year-old son with autism. We set up a lunch and I was amazed to learn how similar his son had been at Miles’ current age.
This friend cited several therapies with acronyms that I had never heard of before. He mentioned that Milestones Autism Resources had been a big help to him. Since we were definitely in need of help, I visited the Milestones website and couldn’t believe the amount of local resources and activities listed. When we learned Miles qualified for Extended School Year (ESY), we used Milestones’ guidance and enrolled our son in Friendship in Teams (FIT) Camp.
I will never forget the feeling I had as I walked out of the building, leaving Miles on his own with people he had never met before. I was worried, even a bit scared, that I would receive a call that he wouldn’t be able to make it through the day. But that call never came. The staff at the camp knew exactly how to work with him. I went from feeling alone to feeling like I was a part of a sub-culture – almost a movement – to help these children become all they could someday be. It was an amazing feeling of empowerment compared to the lack of control we had just experienced a short time earlier.
My first year at the Milestones Autism Conference was just as powerful.
Here was a large group of professionals and parents who spend their lives helping these children and young adults. In just days, I learned more than I did in the previous year of doing autism research on my own. I had contacts in every aspect of what Miles would need. It was exhausting, but rewarding and empowering, too. I know with certainty that Miles would not be as far along in his development had I not attended the conference. I also appreciated hearing different perspectives of how people approached their care. It helped me understand that the treatments that helped my son may not impact the next child in the same way. Each child is so different, there is no absolute right and wrong in terms of solutions. I also witnessed overwhelming love, not only from parents, but also from intervention specialists and a host of others who help parents and children.
Milestones was started by parents who wanted to help each other as well other families struggling with ASD. I have met countless parents who have shared so many important lessons that I would never have learned myself. It makes life so much easier to glean wisdom acquired by those who have faced the same issues.
Many parents feel alone in this journey, but Milestones helps connect us with the incredible supportive community we have here in Cleveland. You never have to feel alone if you have Milestones on your side.
Lev Gonick knows it takes an entire community to raise a child. “When we arrived in Cleveland we had a chance to meet some amazing, amazing folks,” he says. “We are so incredibly lucky. Of all the places we have lived, the Cleveland community is the one that has reached out, that has provided, that has laid down tracks where no one would ever, ever imagine going.”
Gonick, Milestones 2016 Benefit Honoree, husband to Barb and father to daughters Sari and Mya, recently shared about how Milestones has impacted and helped his family. Every milestone in his daughter’s life affords his family an opportunity to celebrate with the community. Every challenge they face is made easier by the collective shoulder of the community.
How did you first hear about Milestones Autism Resources?
“My wife Barb met regularly with other moms to check in about their children with autism and to share what was working for them. Ilana Hoffer Skoff and Mia Buchwald Gelles (co-founders of Milestones) were invited to this informal group. The idea of creating a local organization such as Milestones Autism Resources grew out of these get-togethers.”
In what kinds of ways has Milestones helped your family?
“Before there was a Milestones, I had nobody to collaborate with. Nobody to brainstorm with. Nobody to obtain any education. Everything was done alone. Milestones helped me to navigate the complicated village that [my daughter] Sari has. Milestones has also helped to design a model for supporting the residential and social-emotional needs of young adults on the spectrum. Sari, along with three other young adults, lives in Beechmont Towers in a semi-autonomous arrangement with community support services first outlined by Milestones and in partnership with families and various service providers.
We have felt that we have been able to help other families and give back through regular referrals to Milestones.”
Do you attend the annual conference? Why would you recommend the conference for other families?
“The Milestones conference is an excellent hub to find resources. What the organization has done is to shine a light that the condition impacts all walks of life — all races, class, religions. It has really helped inform and educate the community at large. Our daughters have attended and worked at the conference as volunteers, as has my 87-year-old mother-in-law. Barb has also attended from time to time.”
Why is it important for families of individuals with ASD to feel a part of a community?
“The diagnosis is almost always a shock. Followed by denial, anger and several other emotional rollercoasters. Having a trusted resource in the community as you navigate the new, life-altering reality is hugely valuable. Over time, and over your child’s lifespan, we as parents and our family at large, have found the community in Cleveland to be a source of strength and support. Every milestone in our daughter’s life affords us an opportunity to celebrate with the community. Every challenge we face is made easier by the collective shoulder of the community support here.”
In terms of therapy, resources, etc. — what has made the biggest difference for your child?
“Speech pathology, integrative physical therapies and workforce training have been the central difference makers for our daughter.”
Tell us your child’s most recent “milestone.”
“Sari’s semi-independent living arrangement at Beechmont is a major milestone.”
What was your most recent “milestone” as a parent?
“Recognition at the annual Milestones benefit last year. I shared remarks about how it takes a village to raise a child (taking inspiration from the African proverb). And for the families that were recognized that night, we all know it takes a village to raise a child. And the village is very much both your immediate family and extended to the community that our kids are blessed to be a part of. Milestones has played a huge part in the village that takes to raise our community’s children and we are very, very proud of that.”
What advice would you offer to parents of children with ASD?
“As hard as it is, try not to become overwhelmed with the gigantic picture. I remember well-meaning people saying to us, ‘Oh my goodness, will Sari ever be able to live on her own?’ When you say that to a parent of a 6-year-old it’s the last thing he or she is thinking about. I’m just wondering how my daughter will get through kindergarten. You can’t give someone a magic calming pill. Also, some people are worried in general, regardless of the child having special challenges. But you have to keep pushing the bar. That is really important. Don’t think, ‘She can’t do that.’ For all the reasons why you could imagine that it couldn’t happen, those are the things to look forward to.”
[Photo: New Image Photography]
Q: What are the most common types of medications used to treat autism? How do I know which one is the right fit for my child?
A: Currently, there are no medications which treat underlying causes of autism. Rather, medications are used to target symptoms commonly occurring in autistic individuals such as irritability, aggression, distractibility, hyperactivity, impulsivity, anxiety, mood fluctuations, depression or sleep problems.
Dopaminergic antagonists, risperidone (Risperdal) and aripiprazole (Abilify) are used to treat aggression and irritability. ADHD symptoms (distractibility, hyperactivity and impulsivity) are treated with stimulants methylphenidates (Concerta, Focalin, Metadate, Ritalin, Quillivant and others) or amphetamines (Adderall, Vyvanse and others), atomoxetine (Strattera) or alpha-agonists (guanfacine and clonidine). Anxiety may be treated by SSRI’s such as fluoxetine (Prozac), sertraline (Zoloft) or the non-benzodiazepine anxiolytic, buspirone. Depression, mood irritability or OCD may be benefited by SSRI’s, sleep problems by melatonin, diphenhydramine (Benadryl) or clonidine; and, tics by guanfacine, clonidine or dopaminergic blockers. No medications have been shown to treat stimming or repetitive autistic behaviors (as opposed to repetitive behaviors driven by OCD which may respond to treatment with an SSRI).
Typically, one identifies symptoms which may benefit from medication, prioritizes them and selects a medication to target that symptom. The prescriber takes into account a variety of factors including secondary symptoms, behaviors, other individual characteristics and responses to prior medications. For example, it may be acceptable for an obese child to have the side effect of decreased appetite while this may not be acceptable for an individual who is already having difficulty gaining adequate weight. An individual with ADHD and anxiety tendencies may have exacerbation of anxiety from stimulant medication and lessening of anxiety when his ADHD is treated with atomoxetine. One also considers practical issues such as cost and whether the child will more readily tolerate a pill which must be swallowed whole, a chewable or liquid medication?
Which medication is right for your child is determined by a process of educated trial and observation since any individual’s therapeutic response and acceptable side effect profile may be unique. All medications may have adverse effects though, happily, the overwhelming majority of side effects are not dangerous or irreversible if prescribed and monitored appropriately. Unfortunately, people on the autism spectrum are frequently more prone to side effects. A cardinal rule in dosing medications for people with autism is, “start low and go slow.” Regular communication between the parents, teachers and prescribing physician or nurse is key to finding a medication and dose which works for your child.
It is important to remember that optimal interventions for individuals with autism are multi-modal. That is, a combination of behavioral, educational, recreational, social, language, medical and others. When medication is warranted, parents and practitioner need to remember it is highly unlikely that finding the “perfect dose” of “just the right medicine” will be the entire solution they are looking for. If the parent’s and/or doctor’s perspective is so narrow that the only questions being considered are, “Is this the right medicine?” “Is this the right dose?” “This medication has helped his attention. Now, which medicine do we need to help his anxiety?” the child will not make the gains one would hope for.
For a good resource on autism and medication, refer to the recently-released Autism Spectrum Disorder: Parents’ Medication Guide published by the American Academy of Child & Pediatric Psychiatry. Click here to read the full document.
— Dr. Steven Wexberg
[Opening photo: Jamiesrabbits]
Dr. Steven Wexberg is a board certified pediatrician who is on staff at the Cleveland Clinic Pediatric Institute. He received his medical degree from Case Western Reserve University School of Medicine and has been in practice for more than 30 years.
Our team is currently spending time on Capitol Hill representing Northeast Ohio, connecting with the national #ASD community & making our voices heard. We’re even lucky enough to spend time in private meetings today with staff from both Senator Rob Portman and Senator Sherrod Brown‘s offices!
So far the major takeaways from today have been that, together, we should work to mobilize, educate and talk to as many people as possible in order to foster community and affect change. It’s incredibly important to engage family, friends and neighbors to share your unique experiences and drive understanding.
“What happens on the local level can inform policy,” says Katy Neas, Easter Seals’ Executive Vice President for Public Affairs. We couldn’t agree more!
In that spirit, we encourage you to tell your story and connect with us in social media using the hashtag #MyMilestones. We look forward to a 2017 of working together to build the future we want to see for our families, community and ourselves.
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There has been much in the news recently regarding vaccines and autism – from the President-elect’s meeting with Robert F. Kennedy, the environmental activist and outspoken vaccine conspiracy theorist, to a controversial column that calls vaccines into question written by Dr. Daniel Neides, a family physician and executive in the Cleveland Clinic’s Wellness Institute.
These conversations have re-ignited discussions around vaccines and autism, prompting people to ask, “Do vaccines cause autism?”
The answer is unequivocally no, say experts at the Centers for Disease Control and Prevention (CDC), the American Academy of Pediatrics, Autism Speaks and the Autism Science Foundation. In fact, dozens of studies over the past 17 years show vaccines (and vaccine ingredients) are safe and do not cause autism or other disorders.
“Vaccinations are one of the triumphs of pediatrics and public health,” Dr. Fred Volkmar, director of the Yale University Child Study Center and a keynote speaker at our upcoming Milestones autism conference in June, said in a recent interview with The Plain Dealer.
According to the American Academy of Pediatrics, “Vaccines protect children’s health and save lives. They prevent life-threatening diseases, including forms of cancer. Vaccines have been part of the fabric of our society for decades and are the most significant medical innovation of our time. Vaccines are safe. Vaccines are effective. Vaccines save lives.”
To ignore the implications of evidence-based studies is puzzling, to say the least, and potentially dangerous (and lethal) to an individual child and to the larger community – essentially putting all at risk.
Consider low vaccinations rates in Southern California which enabled the Disneyland measles outbreak in 2014 and correlations between pertussis and measles outbreaks among children in states where parents are exempt from school immunization requirements. We as a community have a responsibility to share the evidence to support life-saving vaccines, as the overwhelming evidence rejects a link between vaccines and autism.
The President-elect has indicated an interest in an autism commission. The autism community needs to prepare for the large numbers of individuals completing their high school careers and seeking community employment, housing to meet their individualized needs, and integration into the community. Let’s dedicate our efforts and resources to support these areas, rather than pour money into and spread misinformation on an issue that has already been settled (i.e. the erroneous link between vaccines and autism).
Ilana Hoffer Skoff
Executive Director, Milestones Autism Resources