When your child is diagnosed on the autism spectrum, what should you do? How should you cope? Here are resources to help you become your child’s strongest advocate.
According to the Centers for Disease Control (CDC), autism affects 1 in 88 children, and hundreds of families are receiving news of an autism diagnosis every day. Autism is a developmental disability that significantly affects three areas: communication (verbal and nonverbal), social interaction, and behavior. It is a spectrum disorder, meaning it affects “each person in different ways and can range from very mild to severe,” the CDC notes.
Many autism and medical groups advocate for early intervention and intensive therapy to help achieve maximum progress and recovery for a child with autism. They also advise gathering a team of doctors to assess the best treatment. But when you’re sitting in an office hearing the word “autism,” the immediate days that follow can be overwhelming, and it can be difficult to figure out what comes next. What should parents do in those first few days and weeks after receiving the diagnosis? What treatment should they seek? How do they find good doctors? How should they cope and move forward? Here are practical and helpful ways parents can come to terms with the diagnosis and devise a plan of action.
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Make Sure It’s the Right Diagnosis
When parents hear a doctor’s diagnosis of autism, it can be the worst news to receive. Pamela J. Compart, M.D., a developmental pediatrician with HeartLight Healing Arts in Columbia, MD, stresses getting a diagnosis from the right people: “There’s no slam dunk to diagnosis. Some kids are diagnosed through the school system and not through a professional, but your child should see a developmental pediatrician or a neurologist with an interest in autism.” Dr. Compart advises that children gets a hearing test because neurological hearing loss can seem like autism.
Autism has no known cure — no surgery, medicine, or therapy. There is no typical path of treatment that works for all children with autism, but there is treatment, says Dr. Compart. Before any treatment can be discussed, parents have to get past absorbing the news. “Even if you thought your child has autism, it’s different when you hear the word. In the doctor’s office, you’ll hear lots of things, but you may forget them. You have permission to call your doctor back.”
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Take Time to Grieve and Absorb the News
Receiving news about any difficult diagnosis is difficult. A thousand questions race through the mind: What does it mean to have a child with autism? What will the future hold? Can the child make strides and live a normal life? What should a parent do to help their child? First, parents must deal with feelings of grief about the diagnosis. “Your life has changed in that moment and nothing [bad] will happen to your child if you wait a week or however long it takes to get your bearings,” says Dr. Compart.
“Some parents do better by diving into research and looking for ways to help their child, but I’ve found that most need to grieve for what they thought was their child’s future. It’s not that they can’t help their child have that future, but the journey will be different.” Dr. Compart suggests that parents talk to each other and figure out what they will tell the family, but be prepared for unexpected reactions. “You can’t shift from grief to hope immediately. You have to go to the worst-case scenario and come back up.” Although autism awareness has risen extensively in the past several years, there is still uncertainty surrounding it.
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Start Research and Get in Touch with Specialists
The one thing parents must do quickly is see autism specialists and pursue further testing and evaluations, but getting the help of educational services usually means being put on waiting lists. Every state has early interventional services (often for children ages 3 and under) as well as special education (often referred to as exceptional education). Procuring these services takes time, as does getting appointments. Lisa Goring, Vice President of Family Services for Autism Speaks, says getting on waiting lists is something families should pursue even while they go through the grieving process.
“Those first days, even if you take just 20 minutes to get the process started, it helps. Some families say they never knew it would take so long to get into certain programs or see certain doctors.” Goring suggests looking up local or state autism organizations in the area and contacting them to find out which doctors are recommended and which services should be pursued first. “Sometimes taking that first bit of action to get your child on the right waiting lists is the what parents need to do to help them process,” Goring says.
Become Familiar with Your Child’s Rights
The terminology and information about the rights of a child with autism can be overwhelming. You have to learn a whole new language of laws and terms such as IEP (individualized education program), LRE (least restrictive environment), EI (early intervention), IDEA (Individuals with Disabilities Education Act), and FAPE (Free Appropriate Public Education). The sooner parents and caregivers familiarize themselves with these terms and the rights, the sooner they can become their child’s toughest and best advocate.
The family services team of Autism Speaks, under the Goring’s guidance, recently updated its “100 Days” kit, which provides guidelines on how parents can get through their first few months after receiving the diagnosis. A section about legal rights provides a good starting point for understanding special education services. Talk to other parents of children with autism to get more information. “Parents’ support groups sharing experience and knowledge with each other is one of the most powerful things out there,” explains Asma Sadiq, M.D., Director of the Division of Child Development at Beth Israel Deaconess Medical Center in New York. Dr. Sadiq offers information to her patients about a parents’ support group to join or consult for key hands-on practical information.
Resources:
- The Council for Disability Rights
- Autism Speaks: 100 Days Kit
- Autism Speaks: Legal Rights and Services
- Legal Rights for Children with Autism
- Autism Resources: Glossary of Terms
- Autism Education Network
Helping Your Child With Autism
Gather a Team of Doctors Together
Treating autism is a team approach, with parents as the team leaders. A child with autism may need to see several doctors and therapists who will need to stay updated on any special problems. Depending on a child’s problems this team might include a pediatrician who specializes in developmental behavior, a neurologist, a pediatric gastroenterologist, a doctor with expertise in biomedical interventions and autism treatment, a speech therapist, an occupational therapist, and a physical therapist, to name a few. Dr. Compart strongly advocates that parents secure medical doctors first as one of the first steps.
“The child could have traditional medical problems,” she says. “Does your child need his hearing or vision tested? Does he need an EEG to look for seizures? Thyroid or genetic testing? You need someone who will think about your child from a traditional medical standpoint. Get that appointment; get on that waiting list. If your life is flexible enough for cancellations, get on that cancellation list.” Simultaneously, look into finding educational experts, therapists and a biomedical specialist. Special-education experts help parents navigate the complexities of getting appropriate state or county-funded educational services for a child with autism. Biomedical specialists can offer treatments that address autism from a biological, chemical, and medical standpoint by exploring diets, vitamins, and supplements to help regulate the child’s biochemistry, but these treatments often require more money and financial resources.
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Consider Adding a Biomedical Expert
Food sensitivities, vitamin and mineral deficiencies, intestinal yeast overgrowth, gut and brain inflammation, allergies, gastrointestinal problems, and heavy metals are among the litany of medical issues that can be associated with autism. Alternative treatments may include gluten and casein-free diets, vitamin and mineral supplements, vitamin B12 shots, anti-inflammatory treatments, yeast treatments and gut support, detoxification support, and chelation therapy treatments. Brain inflammation, yeast, detoxification, allergy sensitivities, and gastrointestinal problems are among the many medical issues and alternative treatments associated with autism.
According to the Autism Research Institute (ARI), the amount of research on biomedical therapies and the number of parents who use them have risen exponentially in the past several years. After traditional diagnosis and traditional therapies have been tackled, Dr. Compart says the biomedical aspect should be addressed. “I tell parents we’re going to try to answer two questions: ‘Are your child’s body and brain getting what they need to function at their best? Is there something getting into your child’s body and brain that is interfering?’ It’s a simple premise, but answering those questions can get incredibly complicated.”
ARI and Talk About Curing Autism (TACA) both offer lists of doctors, by state, who specialize in biomedical therapies, but finding these doctors can mean painstaking medical testing and documentations of what does and doesn’t work. Biomedical therapies aren’t cheap, either; most physicians who specialize in them do not accept insurance, and the supplements and special foods are costly. A family can sink hundreds of thousands of dollars into such treatment over the years. Dr. Compart says, “You need to do this with guidance. You have to consider your resources. This can help, sometimes immensely, and sometimes in smaller ways.” Dr. Compart feels biomedical treatments are synergistic with educational and therapy services. Helping a child’s brain work better internally allows him to benefit optimally from these external supports.
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Learn the Tools of Therapy
As recently as 10 years ago, autism and the Applied Behavior Analysis (ABA) were synonymous. ABA is one of the oldest and best-researched types of therapies for treating children with autism; it works with the principles of rewarding (or positively reinforcing) a child when he learns something or exhibits good behavior. It has worked wonders for some children and has the most research to support its effectiveness in reducing the symptoms of autism. It is often the first therapy parents pursue for their children, but is not the only or the right therapy for all.
Now there are several other effective forms of therapies for children with autism: the Floortime method, the rapid prompting method, the Picture Exchange Communication System, verbal behavior analysis, sensory diets, and speech, occupational, and physical therapies. Goring says it’s important to remember that a combination of therapies may be needed and that one therapy can work for a while before it plateaus. “There’s no road map to what will work best for your child,” she explains. “Go online and research first. Talk to other parents to see what you may want to try with your child. Document the progress. I started making a video diary of my son when he was diagnosed 14 years ago. It was a visual way to see what was working, when things started working, and when we needed to change things up.”
Resources:
- Autism Speaks: Manuals and Tool Kits
- Autism Research Institute: Treatment Evaluation Checklist
- Autism Society of America: Treatment Options
Organization Is Key
Start Your Financial Planning Early
It’s a costly road ahead, and reviewing finances is an important and sobering thing to do. You’ll need to learn what your insurance will or will not cover. State laws vary on insurance autism coverage (25 states have enacted autism insurance reform laws). In 2006, Michael Ganz, the Adjunct Assistant Professor of Society, Human Development, and Health at Harvard School of Public Health, led a study on the lifetime costs of caring for a person with autism, which appeared in the book Understanding Autism: From Basic Neuroscience to Treatment, edited by Steve Moldin and John Rubenstein. He found that it can cost about $3.2 million to care for a person with autism over her lifetime. In a Harvard School of Public Health press release, Ganz stated that the figure likely underestimates the true costs because alternative therapies can be paid out-of-pocket by families.
Often one parent takes on the brunt of care while the other one works, and one salary may not be enough to cover the expenses. Dr. Sadiq says, “I always tell my patients to secure an educational and medical model and get done the evaluations and tests that are covered by their insurance first. Nutrition is a simple and potent tool to start with. Some of the complex testing done using the biomedical model can be quite expensive and not all covered by insurance. This must be planned and done on a gradient. Parents must also avail themselves of the system and get what they’re entitled to through the Board of Education.” Most parents decide early on that they won’t compromise on treatment because of costs, Goring says. As the years go by, the expenses pile up and the financial burden can be a huge strain. “In those early days, if you don’t already have a handle on your income — what’s going in, what’s going out — you should. Start your financial planning early.”
Resources:
- Talk About Curing Autism: Budget Resource
- State Autism Insurance Legislation
- Press Release: Autism Has High Cost in U.S. Society
Get Organized and Keep Good Records
As parents of children with autism embark on treatment and therapies for their child, one of the most important things they can do is to keep accurate and organized records. “Over the years, as we got bogged down with progress and regression, it was often hard to see and remember what my son had learned, what he had accomplished, how far he had come, and what he still needed to learn,” Goring remembers. “So we’d go back and watch the videos we made of him from certain points in his life to remind ourselves of how much he had accomplished versus how he was now.” With evaluations from doctors and schools, educational records, detailed data from behavioral, medical, and biomedical therapies, and doctor’s notes and recommendations, the vast amount of records and paperwork can bury parents.
Some parents organize their child’s records within binders, year by year. Others create files grouped by subject: medical, educational, therapy, etc. Many autism organizations now advise scanning all documents and saving them in online file-sharing sites to reduce paper trails. “Figuring out a good organizational method early on is key,” Goring says. “You need to hold on to pretty much everything because you need to be able to look back on what you have done, how you have paid for treatment, and what has and hasn’t worked.”
Resources:
- The Planner’s Guide for Children with Autism
- Autism Society of America: Organizing Your Records
Always Remember to Ask for Help
Helping your child manage autism is a lifelong journey, and your child’s best friend, advocate, and supporter from day one is you. “The analogy many parents of children with autism hear is that this is a marathon, not a sprint. And you will exhaust yourself. You need to pace yourself because this is for the rest of your life,” says Goring. As important as it is to seek the best interventions and therapies when your child is still at a young age, it is also important to get help when you need it and look after your own health and well-being and that of other family members. “No one can run on empty and no one can do it alone. You are on the road to becoming an expert in autism and all its many facets. You are absorbing stress levels that can be detrimental to a marriage,” Goring says.
Most parents of children with autism emphasize the need to decompress, take breaks, and ask for help. Dr. Sadiq recommends to many of her patients’ families that they do whatever they can to keep the family healthy. “Join a support group, talk it out, get outside and take a walk, ask family members to give you some respite. Or look into what your state offers by way of respite services,” she says. “Often, the parents I see leave my office thinking they have to go at this alone, and that is not the case. Everyone needs to ask for help. We all must put an emphasis on seeking happiness.”
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