Advice for Parents of Young Autistic Children (2012, Revised) - Part 2 | Jump to Part 1
By James B. Adams, Ph.D., Arizona State University, Tempe, Arizona
Stephen M. Edelson, Ph.D., Autism Research Institute, San Diego, California
Temple Grandin, Ph.D., Colorado State University, Fort Collins, Colorado
Bernard Rimland, Ph.D., Autism Research Institute, San Diego, California
Jane Johnson, Autism Research Institute, San Diego, California
Preparing for the Future
Temple Grandin: “As a person with autism I want to emphasize the importance of developing the child’s talents. Skills are often uneven in autism, and a child may be good at one thing and poor at another. I had talent in drawing, and this talent later developed into a career in designing cattle-handling systems for major beef companies. Too often there is too much emphasis on deficits and not enough emphasis on talents. Abilities in children with autism will vary greatly, and many individuals will function at a lower level than me. However, developing talents and improving skills will benefit all. If a child becomes fixated on trains, then use the great motivation of that fixation to motivate learning other skills. For example, use a book about trains to teach reading, use calculating the speed of a train to teach math, and encourage an interest in history by studying the history of the railroads.”
Although young children with autism may seem to prefer to be by themselves, one of the most important issues for older children and adults is the development of friendships with peers. It can take a great deal of time and effort for them to develop the social skills needed to be able to interact successfully with other children, but it is important to start early. In addition, bullying in middle and high school can be a major problem for students with autism, and the development of friendships is one of the best ways to prevent this problem.
One of the best ways to develop friendships is through shared interests such as boy scouts, robotics clubs, school plays, band, school newspaper, FFA, or 4H projects. Those activities provide peers with whom a child can share his or her favorite interests.
Friendships can be encouraged informally by inviting other children to the home to play, with parents or therapists helping to supervise and support those playgroups. In school, recess can be a valuable time for teachers to encourage play with other children (supervision is important). Furthermore, time can be set aside in school for formal “play time” between children with autism and volunteer peers – typical children usually think that play time is much more fun than regular school, and it can help develop lasting friendships. This is probably one of the most important issues to include in a student’s Individualized Education Program (IEP, or education plan for the child).
Most states will provide some services for children with autism, primarily funded by the federal Medicaid program. Many states have waiting lists for a limited number of slots. The quality of services varies widely state to state. Most states have one set of services for children under 3 years old (early intervention), and a second set of services for older children and adults.
State Services for Developmental Disabilities. Typical state services for people with autism include respite, habilitation, speech therapy, and occupational therapy. These services are generally provided as part of the federal Medicaid program. The qualifications for these programs vary between states, but are generally limited to children with significant developmental delays.
Once a child is deemed eligible, he/she may be awarded service hours. Many states have waiting lists for services, but some states provide services to everyone who qualifies. It is then up to the parent to choose a provider agency for each type of service. Speech therapists, occupational therapists, and physical therapists are in high demand, and the state usually pays only modest rates. Thus, it can be a challenge to find them. Similarly, it can be very challenging to find respite and habilitation providers (for an ABA program), and an even greater challenge to train and retain them. Often parents need to advertise for therapists and then bring them to a provider agency for hiring. Often parents need to hire behavior consultants to train their habilitation (ABA) workers; this is very important and highly recommended if the parents can afford it.
For children younger than 3 years old, there are early intervention programs. For children over 3 years of age, there are pre-school and school programs available. Parents should contact their local school district for information on their local programs. In some cases a separate program for special-needs children may be best, but for higher-functioning children integration into a regular school setting may be more appropriate, provided that there is enough support (a part or full-time aide, or other accommodations as needed). It is important that parents work with their child’s teacher on an Individual Education Plan (IEP), which outlines in great detail the child’s educational program. The IEP should not be limited to academic skills, but should include focus on language, social skills, and developing friendships. Additionally, meeting with the child’s classmates and/or their parents can be helpful in encouraging other students to interact positively with the autistic child.
In some states, home therapy programs (such as ABA and speech therapy) may be funded by the school district, rather than through the state. However, it may take considerable effort to convince the school district to provide those services. Check with your local ASA chapter and other parents about how services are usually provided in your state.
Social Security Assistance
Families with limited income (under about $25,000-$35,000/yr depending on family size and assets) can apply to the Social Security agency to obtain monies to help children with a disability. For more information, contact your local social security office by calling 1-800-772-1213.
Special Needs Trust
Children who have assets over approximately $2000 are ineligible to receive state and federal services. They must spend their money first. However, most states allow “special needs trusts” to be set up for children with disabilities. These are irrevocable trusts in which a guardian decides how to spend the money on the child. They are the best way for relatives to leave funds to the child, because these monies do not count against the child when determining their eligibility for government services.
For more information, contact a lawyer who specializes in special needs trusts. In addition to working out the financial details, it is very useful to write up a description of suggestions of how you want your child cared for and/or supported. MetLife also has a special program for children with developmental disabilities.
Today, most adults with autism are either living at home with their parents or living in a group home. Some higher-functioning people live in a supported-living situation, with modest assistance, and some are able to live independently. Some are able to work, either in volunteer work, sheltered workshops, or private employment, but many do not. Adults with PDD/NOS and Asperger’s generally are more likely to live independently, and they are more likely to work. Unfortunately, they often have difficulty finding and then maintaining a job. The major reason for chronic unemployment is not a lack of job skills, but limited social skills. Thus, it is important to encourage appropriate social skills early on.
Some of the most successful people on the autism spectrum who have good jobs have developed expertise in a specialized skill that people value. If a person makes him-/herself very good at something, this can help make up for some difficulties with social skills. Good fields for higher functioning people on the spectrum are architectural drafting, computer programming, language translation, special education, library services and science. It is likely that some brilliant scientists and musicians have a mild form of Asperger’s Syndrome (Ledgin, 2002). The individuals who are most successful often have mentors either in high school, college, or at a place of employment. Mentors can help channel interests into careers.
It should also be pointed out that the educational, therapy, and medical options available today are much better than in past decades, and they should be much better in the future. However, it is often up to parents to find these services, determine which are the most appropriate for their child, and ensure that they are properly implemented. Parents are a child’s most powerful advocates and teachers. With the right mix of interventions, most children with autism will be able to improve. As we learn more, children with autism will have a better chance to lead happy and fulfilling lives.
What To Do Next?
- Attend one or more parent support groups, or join a parent email listserve: Parents can be a wonderful source of support and information.
- If you don’t already have one, get a proper diagnosis; you will need it to secure appropriate services. Some practitioners will give you a ‘softer’ diagnosis in order to spare your feelings—this is not actually a kindness, because it will impede your ability to get the services your child needs and is entitled to.
- Contact your state’s Developmental Disabilities program and apply for services. Be persistent.
- Contact your local school district and ask about school programs. See what they have to offer.
- Find a local physician who offers an integrated medical approach to autism. Some physicians will be open to medical and nutritional testing and medical and nutritional treatments, but others will not – find one who is willing to help your child, as opposed to just monitoring the severity of your child’s problems. Do not take your child to a physician who does not support you or respect your viewpoint.
- Attend the Autism Research Institute’s conference. If you cannot attend, download the free videos at www.autism.com from our most recent conference.
- Make sure you still find some time for your other children and spouse/significant other. Having a child with autism can result in many challenges, and you need to be prepared for the long term.
- Continue trying to learn all you can. Good luck!
Autism Research Institute: Publishes a quarterly newsletter summarizing current research on autism, and maintains a website (www.autism.com) full of relevant information about autism. ARI also sponsors biannual conferences that cover a wide range of topics including medical treatment, ABA/education, diet, sensory issues, adults issues, and more. You can learn more about these conferences at www.ARIConference.com