In honor of World Autism Awareness Day, we are thrilled to highlight how an organization half way around the world is raising international acceptance and support of Autism Spectrum Disorder (ASD).
Tryphinah Mvubu, Founding Director of Autism Swaziland, shares firsthand experience as a mother of child with autism, her challenges and triumphs, and how her son, Nick, 13, is the champion behind their organization, “Nick’s great improvement has been a source of inspiration to our family, his therapists and many – thus, he became the hero behind Autism Swaziland.”
Tell us how you have been personally touched by autism.
My journey with Autism Spectrum Disorder (ASD) started in 2007, when my boy, Nick, started early childhood education at the age of 4. At this stage, he could not formulate his own speech. He was hyperactive, had insomnia and was only sleeping 15 to 30 minutes at most since he was born. He exhibited many other characteristics of ASD some of which were seen from birth but I did not know at the time what it was.
Nick’s preschool teachers had sent many complaints and eventually instructed me to take him for assessment. They told me he is a “special child” but I did not know what that meant. Upon the first assessment, he was with diagnosed ADHD. They too repeated the term, “special child.” I then took him to the Psychiatric Hospital and he was put on Ritalin, which did not make any difference. It was after the Ritalin had failed that I heard the word “Autism” for the first time. An autism expert who had worked with children with ASD in the US diagnosed Nick with Asperger’s Syndrome. Nick started therapy with an Occupational Therapist and Language and Speech Therapist at Mbabane Government hospital.
Since Nick’s diagnosis, can you share with us the ups and downs? Success stories?
We did not miss his appointments with the therapists. We saw a huge difference. He could now see me in a picture and also recognize me in person, the same with all the other family members, but there were times when you could not be sure if he knew you. Nick started formulating his own speech when he was 9 years old and his coordination improved drastically. His therapists attributed this development to the drums he practiced with a passion from the age of two. He used kitchen utensils such as cake tins, bottles, pots and cutlery, and at times stones. Today he is one of the best in playing drums. He is invited to play even for weddings. He also taught other boys who are now playing in their churches. Nick has been able to make many friends and heroes through his skill for playing drums.
In terms of Nick’s education, his learning was not easy since we had to negotiate and educate each teacher about his condition. But he passed well, ranging from 75% up almost in all subjects. With computer and French he could score up to 100% at times.
Nick is now able to sit still and to sleep for many hours. When he was younger he did not want to be touched nor cuddled. But today he is very affectionate. He can now eat a variety of foods, though he still very choosey. He is also passionate about saving his own money to buy his own Samsung tablet. He likes gadgets and the Internet, as they help him see new drum players. He learns new styles from them which he immediately tries out in church. He plays soccer. He can wash his own clothes and dress himself properly.
Sometimes we deliberately miss his routine just to see his reaction – he can now cope. When his sister is away at university, all he needs to know is when she is leaving home and the month of her return. Around that time, he will begin asking about her. Generally, Nick can now cope with many changes. We have really come a long way with him.
What does the next chapter in Nick’s development look like?
Nick is now classified among highly functional individuals with ASD, he has good speech both in his first and second language. He still struggles though with abstract concepts, like words with double meaning, humor, idioms and social cues. He still does not know he has a condition since he does not understand it.
Nick is a teenager now and we, as a family, are struggling with addressing sexual reproductive health issues due to his concrete thinking and inability to understand some words.
Tell us about the level of autism awareness in Swaziland.
Living in a country where ASD is not known, Nick was often misunderstood as a spoiled brat. Some parents would even try to discipline him in my presence since I was considered failing to be a good parent. Being a church person, it was never easy to be in church with him. For many years, we would spend most of the time outside until he was allowed to sit on the drums.
Swaziland is still at an initial awareness stage in as far as issues of autism are concerned. Many people do not know nor understand autism and it is highly stigmatized. This includes the leadership, legislature, many in the health sector and the community at large, making it difficult for children and persons with ASD to access basic services. Thus some parents opt to hide their children from ridicule and they refuse to open up about this challenge.
There are three government hospitals that give therapeutic services to individuals with ASD namely, the Psychiatric Centre, Mbabane government and Mankayane hospital here in Swaziland. But these too, have a limitation in adequately providing therapeutic services to individuals with ASD. Yet autism is on the rise here. There are private service providers though few. They are expensive for the masses, many of which are counted among the almost 70 percent of the country’s population that lives below the poverty line.
The plight of individuals with Autism Spectrum Disorders in Swaziland and Africa cannot be over emphasized, the list is endless.
With firsthand experience, you saw a need for Autism Swaziland. What kind of support and services does your organization offer?
I founded Autism Swaziland in 2013 as Litsemba Lemliba Support Centre (loosely translated as, “Hope for the Children – Our Future Generation”). The name then changed two years later to “Autism Swaziland” for the understanding of the international community. However, Autism Swaziland is also known as Litsemba Lemliba Support Centre for stigma reduction purposes – as autism is still highly stigmatized.
Autism Swaziland focuses on children and families affected by Autism Spectrum Disorders by giving support, rehabilitation, awareness, advocacy, protection as well as psychosocial support to their families. Thus bringing hope to children with ASD and their families.
How important is international awareness and acceptance of autism?
International awareness of autism is important in the sense that it helps Swaziland, though still at an awareness stage, to align with what the world is doing. For example, the theme for this year’s World Autism Awareness Day is, “Autonomy and Self Determination.” There is no autonomy without awareness, as it says, “I can make informed decisions about my life.”
International awareness will help us educate parents in what they need to know about ASD so that they can make informed decisions for their children. This will help them positively change the environment of the child. The parent’s knowledge will reduce stress for the family, thus reducing stressors for the individual with ASD. In our experience working with parents, many children drastically improve once the family knows and accepts the condition.
Tell us about your relationship with Milestones Autism Resources. How is Milestones helping you and your organization?
Milestones has helped my organization in so many ways – with invaluable tool kits, resource discs, and a brochure detailing how teachers and pupils can understand children with ASD at school and in class. These tool kits have gone a long way in helping our Program Enhancers, teachers and parents. There has been a positive impact on the children we frequently support.
Haley Dunn on the Milestones team is our Contact and Resources person and we are forever grateful to her, Karen J. Smith, our Autism Swaziland US contact, and the entire Milestones family. I can’t wait for the Conference and to meet all these great people in person!
What do you hope to gain from attending the Conference in June?
Milestones, through Karen Smith, has invited me to attend the 15th Annual Conference and I look forward to attending! As the Founding Director of Autism Swaziland, I hope to broaden my understanding of ASD issues from the enlightened input of the practitioners that will attend the conference.
I look forward to meeting like-minded professionals as myself and I am hoping to gain knowledge from others at the conference, through the workshops and shared experiences. I also hope to enlighten others about Autism Swaziland/Africa.
As a mother of a child with ASD, now approaching the teenage stage, I am eager to learn more approaches to issues of Sexual Reproductive Health (SRH) which is a major challenge among children with ASD and disability in general. With HIV/AIDS infection rate on the increase in Africa, especially among girls with ASD, I am also anxious to know how my country can develop an SRH program that will effectively address such issues.
My hope is to return to my country with new approaches to help better the lives of many people with ASD. I am also hoping that my country can be a learning Centre for many countries in Africa in the near future.
Good news for families whose insurance has denied coverage of Applied Behavior Analysis (ABA) services in the past.
New state legislation, House Bill 463 (signed into law by Governor Kasich on January 4, 2017), will require coverage for medically necessary treatments of autism, including ABA for individuals under the age of 14 years.
To help you access insurance covered ABA in Ohio, you should know the following:
-HB 463 requires private insurance companies to cover ABA in Ohio starting April 8, 2017
-Autism insurance coverage took years of parental activism and two different legislative bills. The successful bill was spearheaded by Representative Cheryl Grossman of Grove City. The result is House Bill 463, new legislation that includes provisions that require private insurersto provide coverage for autism spectrum disorder. The section of the bill regarding autism coverage originated from House Bill 350, which Rep. Grossman sponsored.
Under the provisions, any health insurance plan is required to provide coverage for the screening, diagnosis and treatment (including ABA services) of autism for individuals up to the age of 14. Coverage cannot be terminated as a result of such a diagnosis.
HB 463 allows a health plan issuer to review an autism spectrum disorder treatment plan on an annual basis. Allows a health plan issuer to review an autism spectrum disorder treatment plan more than once a year if the additional reviews are agreed to by the overseeing physician.
To access ABA services through insurance, parents need:
-A formal diagnosis of autism spectrum disorder
-A Script for ABA Therapy if the diagnosis is either over 1 year old or does not contain a recommendation for ABA Therapy
-Choose an ABA provider who will perform assessment/evaluation that will be used to create a treatment plan that indicates the number of hours of ABA therapy needed (the Treatment Plan must be updated every 6 months and submitted to for re-authorization of services)
If you have questions, contact your insurance company. Parents/guardians are still responsible for co-pays/charges not covered by insurance.
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]
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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.