When a child is first diagnosed with an autism spectrum disorder, his or her parents are confronted with an immense set of decisions. What do I do first? Where do I go? What can I worry about later? Sometimes, this can be overwhelming. In my experience, it is best to simplify the process as much as possible. There are indeed priorities and bases to cover first, but there is also planning that you can do to create a sort of “road map” to guide your next steps in preparing for the future.
Get an Evaluation
The first step for parents who believe that their child may have an autism spectrum disorder is to get an evaluation from a reliable source. These days, in many metropolitan settings there are one or more autism centers, complete with a team of health care specialists who diagnose and treat autism spectrum disorders (ASDs) and similar disorders. Autism centers typically offer a range of services, including psychiatric and psychological evaluations, speech and language services, occupational and physical therapies and other medical services such as neurology, developmental pediatrics and audiology. While not every center may offer all of these, all should have a physician specializing in diagnosing and treating ASDs. Center-based approaches aren’t the only option out there, but they offer the possibility for comprehensive evaluation and a treatment plan that no single clinician can do alone.
After an evaluation is completed and a treatment plan is in place, the next area to pursue is getting appropriate services. These services are critical, as they target core developmental challenges in autism. The younger a child is when he or she begins to receive services, the more his or her developmental trajectory can be positively affected by intensive educational and developmental interventions.
Early intervention, which can begin at birth and last until a child reaches the age of three, includes home and community-based therapies that help a child build motor and language skills and which encourage development. I’ve seen many children over the years overcome developmental challenges through intensive early interventions and get onto a normal developmental trajectory.
Early intervention is typically followed by center-based preschool to help a child achieve his or her fullest potential. An important bonus of center-based preschool is that the school setting becomes a place not only for children to learn among peers, but for parents to develop skills for working with their children, meet other parents with similar challenges, and begin to develop a social network for the future. The most effective developmental services are those which are reinforced at home. Parents should meet periodically with the teachers and therapists, find out what strategies and techniques they are using in the classroom, and learn how to use the same lessons and skill building activities at home.
Children on the autism spectrum are also eligible for special education itinerant teaching and related services at their daycare, pre-school or home. In New York State, families may obtain Applied Behavior Analysis (ABA) through early intervention and special education services if a professional evaluation deems this service necessary to the development of their child.
Find a Good Physician
The other key for meeting the challenges of autism is to find a professional who really knows autism and stick with him or her for the long haul. These clinicians are most often primary care medical professionals or specialists such as psychiatrists or neurologists, but they can also be social workers or psychologists. The key questions are: Can they recognize the range of behavioral and educational issues that typically arise in children with ASDs? Do they have a network of providers for referrals (mental health workers, occupational and physical therapists, and speech and language pathologists)?
Can they work with a family over the long term?
Trying to identify and meet all the needs of a child with an ASD can be quite overwhelming and very time-consuming. It is important to remember that not everything is an immediate priority. Here are some important things that parents can do at their own pace:
Consider genetic testing – The field of medical genetics is progressing at an extremely rapid pace. In a few years, it may be possible to diagnose the genetic cause of perhaps half of all cases of autism. Knowing a particular genetic syndrome early can allow for more targeted preventive strategies and can help family members understand their risk of passing on symptoms.
Join a Parent Advocacy Network – I recently typed “autism advocacy” into Google and within 0.19 seconds got nearly 45,000 results which included many resources for parents. I’ve spoken at many parent advocacy network meetings throughout the New York City area and it hasn’t taken long to realize the enormous value of these groups. Isolated parents suddenly meet people who totally understand them. Caregivers receive word-of-mouth referrals for effective, reliable providers, and advice on “how to navigate the system.” There is great power in validation and in numbers, and members of these networks really end up knowing how to effectively advocate for their children.
Familiarize Yourself with State Funded Programs for People with Disabilities – A good reason to receive intellectual and adaptive functioning testing is to establish eligibility for specially tailored programs designed to help people with developmental disabilities. Family support services for these individuals can include parent training, advocacy, service coordination, financial assistance, crisis intervention and behavior management. These services are often provided at no cost to the family. Many states, including New York, offer the Home and Community Based Services Waiver for individuals with developmental disabilities, which can provide parents with in-home skills training for the child, a variety of respite services, parent education and training, and much more. While Medicaid is a requirement for this waiver, some regions allow certain children under 18 who would typically not qualify, to gain access to Medicaid through the Waiver. As a consequence, these individuals also gain access to clinical services which are often poorly covered by private insurance. The waiver is also the funding mechanism for most day, vocational and residential services.
Plan for the Transition into Adulthood – Perhaps the most major transition time in the lives of people with disabilities is when they age out of school, which in many states is at 21. For those with the social and other pervasive developmental challenges of autism, it makes sense to start thinking about these post-schooling basics during their teenage years: social/vocational opportunities, legal status, residential options and finances. The Individuals with Disabilities Education Act, in fact, requires schools to assist with transitional planning beginning at age 16. This includes creating linkages with agencies which will provide post-school services.
Quality special educational programming includes school-to-work experiences and embeds skill-building opportunities within the curriculum to foster a successful transition. When this happens, the changeover is far more seamless. From there, a person with a disability is typically eligible for a range of state-funded supports and adult day services to help with job supports, social and vocational skills, and recreational outlets. To find out more, check with your state governmental agency that provides services for individuals with developmental disabilities.
Consider Legal and Financial Planning – Fostering independence is the ultimate aim of all developmentally based programs. Sometimes, a person isn’t capable of making his or her own decisions by the time they reach 18 and are considered a legal adult. In this case, a parent, family member or state-appointed agency can advocate to become an individual’s legal guardian. Parents can learn more by contacting an agency working with people with developmental disabilities, or by attending one of many conference workshops on the topic.
Financial trusts are another important part of the long-term planning process for a family member with a disability. This issue and companion strategies involving powers of attorney, health care proxies, and estate planning can be investigated through an attorney, a trust company or one of several non-profit advocacy agencies for people with disabilities.
Explore Residential Options – What’s the most common emotion I see in parents who ponder moving their child to a residence in the community? Guilt. But helping a grown child who cannot live on his or her own to successfully transition to a new supported life outside the home is an important developmental step. Though the waitlists can be long, people are typically matched with the level of supports they need, and most residences are learning environments in which trained staff can best help facilitate greater independence and growth.
Remember the Bottom Line
While there may not be a clear endpoint for parents of individuals with ASDs where all is neatly wrapped up, there is certainly hope. Today, there are more Web sites, resources and supports than ever to help parents on their journey. And with each passing year, while the answers won’t be simple, at least the questions are becoming clearer and clearer.
Dr. Peter Della Bella is the Director of Clinical Programs at Premier HealthCare, a member of the YAI Network. Dr. Della Bella would like to thank Judy Omidvaran for her continual inspiration to write and speak on these issues.