Tags: Special Needs
My Child Has Autism—Now What?
Finding the Support and Resources for Your Child and Family
April 01, 2010
My child has autism. Now what?
When you have met one child with autism, you have met one child with autism. The next one will be different.
That's how Jane Grimes, community development director for the Applied Behavior Center for Autism in Indianapolis, describes the disorder. To be fair, she is not the only one to say so either. Just about any expert on Autistic Spectrum Disorders (ASD)—therapist, parent or otherwise—will echo the very same words.
New statistics by the CDC show that, on a national level, autism affects one out of 110 children. Grimes says the statistics for Indiana are even narrower, affecting one out of 101 kids and ranking the Hoosier state 7th highest for incidents of autism in the country.
"What many people don't understand is that people with autism are all so unique, which is different than many of the other disabilities out there in the community. You can't generalize autism because it's so individualized," says Grimes.
For many, the journey toward a formal autism diagnosis is intense, emotional and difficult. Yet once the diagnosis is made, families face the very real fact that they will be the ones determining their child's treatment regimen, because with autism there is no clear path toward recovery. This responsibility leaves many parents feeling vulnerable.
"So you have the diagnosis, then what? That's a challenge for a lot of people," says Grimes.
My child has autism. Now what?
Many parents will, for better or worse, turn to the Internet to learn about autism. Rather than blindly Googling for facts about the disorder, consider first visiting highly regarded sites such as the website for the Indiana Resource Center for Autism (iidc.indiana.edu/irca/).
Grimes applauds the organization and says it's "the best place, in my opinion, to get good information and quick, helpful tips about autism." For families new to autism, the Indiana Resource Center for Autism works to provide people and organizations with the knowledge and skills to support children and adults on the spectrum. Its website provides insight into a broad set of topics that range from how to introduce your child to his diagnosis to insurance to practical family matters.
Depending on where a child falls on the spectrum, another good early step for many families is to connect with the child's school and find out what special education services he should receive. These programs start for kids as young as 3. If he is younger than three, contact Indiana First Steps to take advantage of state-funded early intervention services.
Creating the game plan.
At age 23, Mary Rosswurm says her son's autism diagnosis felt like a dark cloud over her. Yet, she says, "Once you get over the grief, and it is okay to grieve, then you decide to move on and have a game plan."
Rosswurm, who is the executive director of Little Star Center in Carmel, says once autism is diagnosed, families need to do their research to understand the basis of the disorder and then decide what to do for their child. "Waiting is not an option," she says, noting that early intervention is crucial.
She says it's important to find out what is going to be the best use of the child's time and then fill the child's days with meaningful activities that have an impact. And that, perhaps more than other priorities, weighs heavily on parents' minds.
As parents commence their journey to discover how exactly their child should spend his day, the term applied behavior analysis (ABA) will very likely enter the discussion as it is the only treatment currently approved by the Surgeon General.
Carl Sundberg, clinical director for Behavior Analysis Center for Autism in Fishers, says he is "committed—very committed—to behavior analysis."
Sundberg has worked 25 years in the field of behavior analysis, working more specifically with children with autism in the late '90s who now are his exclusive focus.
"I think behavior analysis really has this figured out, but it has to be good," he says.
Grimes would agree. Her Applied Behavior Center for Autism, which she describes as full-service thanks to its willingness to manage insurance and funding issues on behalf of its clients, also employs ABA.
"We use proven ABA research-based therapies and supports and are committed to quality service, which is evident with our children having positive outcomes in progress," she says.
In short, behavior analysis is the scientific study of behavior. ABA identifies a child's deficit areas and uses his strengths and proven ABA principles to increase language, social, behavioral and academic skills.
Breanne Hartley, clinical director at the Verbal Behavior Center for Autism in Indianapolis, says for families new to the autism community that "it's best for parents to look for ABA programs in the community and start visiting those programs to see what is the best fit for you and your child."
Of course, the Verbal Behavior Center for Autism and others in the area understand that families may want to try new treatments such as placing their child on a restrictive diet. She says therapists at her center will do their best to support the family, yet their focus will continue to be on behavioral therapy.
One alternative therapy some families are trying in addition to their ABA or other ongoing treatment is sensory integration. It is thought that this type of treatment will help with sensory processing issues that many kids with autism face.
The Sensory Center in Indianapolis is one of a handful of Sensory Centers in the United States. Its program combines elements of three sensory interventions: vestibular stimulation, phototherapy and auditory training. The ultimate goal is to help the patient be able to go about everyday activities like shopping at Wal-Mart or participating in gym class. "What our system does is help to integrate all that [sensory input] so they go in and it feels normal to them," says Leslie Greenwald, owner of The Sensory Center in Indianapolis.
Greenwald adds, "We ask [families] not to stop any other therapies, because once we knock down that sensory wall we find that the things that people are trying to teach them come more easily. The focus and concentration comes in. Sleep becomes regulated. We really are a piece to the puzzle." And early research provided by the center does show favorable results for a majority of patients.
The sheer number of treatments from the well-researched to fad treatments makes it all the more difficult for families to feel confident in their choice for therapy at first.
"What it comes down to is you're the parent and although new to the world of autism, you are not new to your child," says Grimes. She believes parents should look for centers that are thorough, focus on the individual child and provide written goals with associated tasks.
Notably, the National Autism Center has recently published its National Standards Project in an effort to help parents and others affected by autism better understand the effectiveness of ASD treatments. It details established, emerging, unestablished and ineffective/harmful treatments. It is a must-read for parents commencing their journey with a child diagnosed with autism and can be found online at nationalautismcenter.org. It will help parents understand which services they are looking into have been well researched and which have not.
"The National Standards Project moves us closer to understanding what evidence-based practices are, and provides guidance on practices that are known to be effective," says Cathy Pratt, director of the Indiana Resource Center for Autism, who was involved in the project.
Living with autism.
A diagnosis of autism does not exempt anyone from experiencing the everyday tasks and joys of life. There are groceries to be bought, teeth to get cleaned, hair to be cut and movies to be watched.
So how do you go about typical activities? The best scenario is to learn which businesses are friendly toward kids with ASD and learn to tell when your kid is up for whatever task you have on your to-do list.
Take haircuts, for instance. "We have a lot of families that come in specifically because we work well with kids, including kids with autism. Also the atmosphere is very kid friendly. Our stylists are very patient. Whether the child enjoys getting the haircut or doesn't, we are willing to work with them to get it done as quickly as possible," says Christie Fosset, vice president of operations for Cookie Cutters.
While Cookie Cutters doesn't require its stylists to undergo specific training on how to serve kids who fall on the spectrum, Fosset says the kiddie salon has been fortunate over the years to have stylists in each of its stores who connect well with these kids and their parents.
Parents can always call their nearby salon and ask them to recommend a stylist who may be a good fit for their child, which is a good idea for any service in which the child will be participating.
This is also a good strategy when choosing dentists. A step in the right direction may be to look for a pediatric dentist who, in addition to the required four years of dental school, will also have undergone an additional two or three years specialty training that includes learning how to work with Special Needs kids of all types.
So when should a parent first take their child with autism to the dentist? As with every other treatment the answer is as early as possible.
Erin Phillips, a dentist with Indianapolis Pediatric Dentistry on the northwest side, likes to see kids as soon as they turn one.
"We think of it like a well-baby check-up. Once you establish a dental home, you have your dentist. You know who to call if you have questions...You really want to start a lifetime of healthy habits," she says.
Phillips also recognizes that kids on the autism spectrum will likely have a more difficult time with their at-home brushing routine. This is another reason she recommends parents start dental visits at a very young age so the child can establish a relationship with a dentist and grow used to the environment. "I feel it takes patients on the autism spectrum a little while to build that relationship, so the earlier we can get them comfortable and familiar with the environment the better it is for them."
Some experts also recommend taking along objects that are reinforcing to the child to make whatever the experience is more pleasant. Bringing along a timer so the child knows when he will be leaving is another strategy. Many parents will act out a mock dental visit or haircut or create picture books of the event in advance of the real thing.
Of course, everyday life is not just about getting a haircut or visiting the dentist, kids with autism also deserve some playtime and will benefit socially from getting involved in activities with their peers.
"There is need for recreational programs for the autism population," says Brian Jones, founder of Power Kids gymnastics, which operates within Deveaus Gymnastics in Fishers. He has taught hundreds of kids with autism over the years, some of whom he has had attend for over nine years. "I've got some kids that are 17 now and over the years have worked through many difficulties they've had."
Well aware that his Power Kids' social skills are underdeveloped, he says, "cognitively, I pull these kids together in groups like typical kids and we work through the lesson plan and social interaction at the same time." They talk about what's appropriate to say to somebody and what's not appropriate.
"Many kids will come in and get right on task, but that's not how the typical world works. You need to go around and say hi to friends and then get on task," he says.
New students and their caregivers are required to attend a 30-minute consultation in order to become acquainted with what could be considered an overwhelming environment. "So I bring them in when the gym is very quiet. We walk through the facility, go over the program and together decide if it's a good fit. Nine out of 10 times it is," he says.
Power Kids provides kids with autism a place to have fun and try new things, a place to exercise verbal skills, improve muscle tone and balance and, of course, get involved in a social situation. Plus, as Jones says, physical activity just makes people feel good.
It goes without saying that all kids on the spectrum may not be cut out for gymnastics. After all, each child is different. There are many recreational opportunities out there including yoga, martial arts, dance, music and more. Once you discover what peaks your child's interest, make a few calls to see which area businesses are equipped to work with your child. It may surprise you that many already are.
For activities that perhaps require less commitment than a gymnastics program, such as sensory-friendly movies at AMC theaters or special needs playgroups, contact the Autism Society of Indiana, which has information on such opportunities.
Community matters. Support groups for mom and dad.
Just as experts agree that early intervention is critical, they all also agree that families should seek support.
"When you get that diagnosis, you are completely overwhelmed. You don't know whom to call, what to do and what support you need for your child," says Grimes, who is the founder and president of Hamilton County Autism Support Group, in addition to her role at the Applied Behavior Center for Autism.
There are many support groups for families affected by autism beyond the Hamilton County Autism Support Group. The Autism Society of Indiana is a good place to start looking. Some companies also have support groups for employees. The most important thing is to find groups that will first listen to you, then respond to your needs because each child is so unique.
"Support is out there," says Jim Dalton, senior vice president and chief operating officer of Damar Services. And he should know. Damar is one of the state's largest not-for-profits and is growing. Dalton says that over the last five to seven years the organization has tripled in size, mostly due to increased need for services for children and adults with autism. Damar works with about 1,100 clients on a daily basis, most of whom are on the autism spectrum. So among the things Dalton is aware of, in regards to ASD, is the need for support for families affected by the disorder.
In response, the organization regularly hosts a series of workshops that are open to the public and explore a variety of topics related to ASD. Damar also has a parent support group that is open to the community and offers sibling workshops that assist the non-disabled child around issues and challenges that go with being a sibling of a child with autism.
Susan Le Vay, director of The Independence Academy in Indianapolis and mother of two children with ASD, agrees that support is essential for families affected by autism and tells families to get involved in the autism community. "You will feel less alone and find so much support through the friends and families you meet." The Independence Academy is a private non-profit school that offers life skills and academic study for students in grades 5-12 with high-functioning autism or Asperger Syndrome.
Le Vay encourages parents to introduce themselves to other parents of kids with ASD while at various clinics or special classes targeting the population. "Those individual connections often turn out to be really important friendships."
She also believes parents should seek out counseling for themselves. "Counseling is also an instrumental part of facing the grief associated with parenting a child with ASD. Having that time with a trained therapist to focus on your own feelings is a valuable part of the healing process."
This is just a start.
Autism is a real disability. Getting your mind wrapped around an autism diagnosis will take time, emotion and energy, but keep treading.
"It's such a process. You talk to parents, you go through the whole process—you're angry, then in denial and then you come to terms with it...If you give up hope on these kids, they will prove you wrong all of the time. I've put limitations on my son and he's exceeded my expectations every time. Never put limitations on our kids, these kids will prove you wrong every time," says The Sensory Center's Greenwald.
Carrie Bishop is a regular contributor to Indy's Child and mother to two young sons who inspire her work and her life.