If you’re like most new parents, nothing can prepare you for the day you receive official medical word that your beautiful toddler is not behaving and developing as one would expect.
Even if you suspected something was amiss—why doesn’t she look up at us when we call her name? Why does he insist on lining up little toy trains for hours?—hearing the diagnosis “autism spectrum disorder” halts your breath.
The diagnosis delivers a real blow, one that requires you to readjust your expectations for your child and the lives of your immediate family members. If you are new to the world of autism, a fresh diagnosis can make you feel uncertain about the future. It will be important to acknowledge this change in outlook and these feelings of uncertainty so you can find emotional support for everyone in your family who needs it.
But there’s another side to the diagnosis. Emotions aside, it’s the first step toward getting your child the help he needs to learn the social and communication skills that most children pick up on their own but that children with autism don’t.
While researchers continue to search for causes of autism, much more is known about how to help autistic children than 20, 10, or even five years ago—and the information about what to do is more accessible than ever. An autism diagnosis opens the door to those specialized services that can help your child make gains. And the earlier this happens, the better. In that sense, a diagnosis has the potential to be an empowering moment, a call to action.
First Questions to Ask
To get your child’s autism diagnosis is to begin asking questions. It’s likely that you are discussing your son or daughter’s situation with a child development specialist—a child neurologist, a developmental pediatrician, or a clinical psychologist who has the training and background to make the diagnosis. The diagnosis also could come from your child’s pediatrician or primary care doctor.
This meeting is a good place to ask questions about next steps:
- What kinds of services does my child need?
- How much of those services?
- Where do I find these services?
Each child with autism has his own needs. So knowing what specific indicators (behaviors, speech and language delays, and other factors) justified a diagnosis is key to determining next steps. Evaluations that help decide what kinds of services you need should compare a child’s actual age in years and months and how he scores compared to typically developing children in these areas:
- Speech and language skills, including receptive language (how well a child understands what is said to him) and expressive language (how well a child can talk, amount of vocabulary he can use). This also covers how well a child can follow directions and carry on a conversation. (Read more about speech and language milestones.)
- Social skills, that is, a demonstrated desire to share observations and feelings with others. The child’s ability to share “joint attention” with others, to point to something and get another’s attention to share an observation about it. Learn more about childhood social skill development.
- Pretend play skills, the degree to which a child can apply pretend situations to toys and share those experiences with others.
(More background information about screenings and evaluations is available from the Autism Society of America.)
What Kinds of Services Are Necessary?
The American Academy of Pediatrics (AAP) recommends children start receiving services as soon as possible once an autism diagnosis is under consideration. According to the AAP, services to address communication and social skills needs, inappropriate behaviors, and school readiness skills should include:
- active engagement of the child at least 25 hours per week, 12 months per year, in systematically planned, developmentally appropriate educational activities designed to address specific objectives
- low student-to-teacher ratios to allow sufficient one-on-one time and small-group instruction to meet specific goals
- inclusion of parent training (so learning opportunities can continue outside of the teaching setting)
- ongoing measurement and documentation of the child’s progress toward educational objectives, with adjustments when needed
- a high degree of structure through predictable routines and visual activity schedules (which use pictures and symbols in addition to words)
How should services be structured? The AAP recommends service providers who specialize in ABA (applied behavior analysis), the process of applying behavioral interventions to encourage positive behaviors and reduce negative behaviors, as well as agencies that use training models called TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children), and DIR (developmental, individual-difference, relationship-based) also called Floortime. Sessions should focus on speech and language therapy, social skills instruction, pretend play, and occupational therapy.
Note that kids on the autism spectrum benefit from one-on-one instruction when learning a wide variety of skills such as paying attention to a teacher, understanding spoken language, using spoken words, and playing appropriately. Often this instruction starts at a table with a child imitating simple actions, such as clapping hands or touching his nose.
What about waiting lists? Parents often cite concerns about waiting lists for autism evaluations and services, a situation that is not likely to change soon, even as more service providers spring up in response to rising demand. All that said, it’s important that you consider the recommendations for the quantity of services carefully, and if it’s possible, follow them. If a doctor recommends 25 hours of ABA therapy a week (remember the services guidelines), and a provider offers less, push back and ask why. It pays to be an educated consumer.
Quality is also an issue. Best practices among service providers call for expert supervision of teachers and therapists, and written documentation of progress (or lack of progress). When you begin a relationship with a new service provider, you can ask what kinds of written progress reports you can expect to receive. You will need that documentary evidence later, when you assess next steps in your child’s education and therapy programs.
What about dietary needs? In recent years, a number of parents have raised questions about food allergies and digestion problems—specifically pertaining to casein, a protein found in dairy products, and gluten, a protein found in wheat and other grains—and their aggravation of autistic symptoms. Some parents report positive gains from cutting out these foods, but researchers haven’t found a link yet. (Read one doctor’s account of the effectiveness of dietary autism treatments.) At the same time, researchers have found that kids on the autism spectrum can express their behavior by extreme food selectivity, or refusing to eat many foods. For these reasons, it can be useful to have your child tested for food allergies to rule out problems that your child may not be able to tell you about.
Where to Go for Services
There are both publicly-funded and private agencies that offer education and treatment services for children on the autism spectrum. In the United States, the early intervention program created by the Individuals with Disabilities Education Act (IDEA) covers children under age three who qualify for special education services. Local school districts are required by IDEA to provide services for children in their communities starting at age three so they can receive what’s called a “free appropriate public education” (FAPE).
You can start with the doctor who diagnosed your child for suggestions on where to go for the autism services you need based on the evaluations of your child. Be sure to ask the doctor for other people you can contact for more information, including other doctors, other parents, and social services agencies that specialize in helping children with autism.
Paying for Services
While government-funded services are free or low-cost fee based (specifics depend on the state where you live), they can sometimes be in short supply. Private services are costly (they can run $40,000 per year or more) and not covered by insurance in many states. States such as South Carolina and Texas passed legislation in 2007 requiring coverage for some autism therapies. Advocates at organizations like Autism Speaks are pushing to expand insurance coverage in other states.
Check with your health insurance company to see what services are covered and with your state representative to see what legislation is under consideration if your insurance does not cover autism-related services. (Read on for state-by-state insurance laws, plus more on health insurance coverage issues at Autism Bulletin.)
Caring for the Caregivers
Learning about autism spectrum disorders will influence how every member of your family looks at people with autism in particular and the issue of disabilities in general. The experience of managing all that’s needed to help a child with disabilities—and your own emotions—also can be a blueprint for burnout.
Waiting for services, watching for signs of progress, learning a different way of parenting so you can manage your autistic child’s behaviors and respond to his needs … together, it’s more than a full-time job. And if you have more than one child, the new dynamic you introduce invites a new level of sibling rivalry, as your “typically developing” child seeks attention and responds to the different parenting techniques she sees her brother receiving.
Take breaks. You need to recognize the demands this places on everyone in the family and look for opportunities to give autism breaks to each person. This could mean nights off for you or your partner (preferably together if you can find a babysitter). Given all the necessary energy you’re spending to help your autistic child grow and develop, it’s a good idea to make outings with typically developing children, so you can show them they are special, too.
Stay connected. Look for the chance to talk to other parents going through the experience of raising kids with autism. You can find them in the waiting rooms at therapy sessions, at school drop-offs, and in many online forums, parent blogs, and websites.
Family members also may find support groups helpful. It could be a group for parents, or just for moms, dads, or siblings. This is a way for family members to spend time with others who understand what it’s like to have a loved one with a disability like autism.
Caring for the caregivers also can be less formal. Look for opportunities for casual celebrations, dinner-time toasts, family hugs, spontaneous cheerleading, and upbeat reminders of how proud you are of your child and his siblings for their hard work. Later, make sure to give yourself a moment to think about what life was like three months, six months, or one year ago. When you feel things are better, that perspective is priceless.
Source: Michael S. Goldberg, babyzone.com