Our ongoing research at Towson University focuses on the transition to adulthood for students with autism spectrum disorder (ASD). Through interviews with 12 young adults with ASD, 35 parents, and 19 teachers, we have gained a sense of some of the issues that matter most. One thing that surprised us was how often people linked experiences during the early school years to adult outcomes. Intense stories were shared regarding issues in the schools and how these impacted timing of diagnosis, bullying, young adult self-esteem, and readiness for transition. That linkage has challenged our tendency to view the “transition” years as separate from those that came before.
Based on those stories and our experiences in the community, we wanted to share these recommendations for parents.
Know your child and how to communicate their strengths and needs. The less those around a child or teen on the spectrum understand ASD, the more they are prone to negatively misinterpret ASD-related behaviors. For example, rigidity or sensory-induced meltdowns may be viewed as the result of a child’s failings (“lazy and manipulative”) or a parent’s (“they spoil him”).
One simple solution is to write up a single-page document that can be shared with teachers, coaches, camp counselors, and anyone else you need to quickly understand and celebrate your child.
- Introduce your child, perhaps with a picture:
Let me introduce you to Sammy. He is six years old and on the autism spectrum.
- List strengths and challenges, explaining how these are part of ASD:
Sammy is passionate about Pokemon, loves to build with Legos, and enjoys working on the computer. As a person with ASD, he finds unexpected change upsetting, is very sensitive to loud noises or flickering lights, and needs support in social situations although he is very loving and wants to have friends.
- Provide some tips for dealing with issues you know are going to come up:
When Sammy has a meltdown, it’s usually because his routine was interrupted or some sensory issue is bothering him. Try your best to prevent Give warnings of any changes that are going to occur in the daily routine and intervene if a noise or light is causing a problem. If Sammy does have a meltdown, he can’t process anything while upset. Just walk with him quietly until he is calm. Let him hold something related to Pokemon to center and comfort himself.
Start with a collaborative spirit…but be ready to fight. Most educators and administrators want what’s best for your child. Approach meetings and interactions in a positive, collaborative spirit, and be sure any concerns are written down and passed out to help focus the meeting on issues of greatest concern to you. Listen to their concerns. However, if your child’s performance declines and you can’t get any change to happen at school, be ready to fight. (See “Know the law” below.)
Know the law. Parents need to be familiar with the Individuals with Disabilities Education Act (IDEA), know their rights, and use that knowledge to effectively advocate through the Individualized Education Program (IEP) process, taking it all the way to “due process” (i.e., court) if necessary. Often, there are local workshops or conferences that can help provide the basic information you need. Professional advocates can be hired to accompany you to an IEP meeting if it come
s to that. Just making a comment that demonstrates you know your rights can change the attentiveness of the IEP team, ensuring their attention to your child’s needs. Remember that you have the right to call an IEP meeting at any time. Learn more about the IEP process.
Don’t let toxic situations fester. Hopefully, your child will always thrive in an autism-friendly, IEP-following school setting, emerging from high school confident and ready to self-advocate in whatever context. However, if a negative situation does arise—one that is going to interfere with that outcome—you should act. It is simply a fact that individual educators can be ASD-savvy or ignorant; a school culture can be welcoming or inhospitable; and special education practices can differ from school to school and district to district. If you do determine that something is amiss at school, take action to remedy the situation. For example, if a teacher has developed a negative view of your child, if the program agreed to isn’t being followed, if your child is making no progress, or your child seems increasingly isolated, then lobby for change, whether it’s a different teacher, a different approach to intervention, or a different school. (For a special case, see the next topic, “Prevent bullying.”)
Prevent bullying. Research shows that up to 50 percent of children with ASD are bullied compared to about 25 percent of other . If your child experiences bullying, do not allow it to continue. Progress that children with ASD make due to social skills interventions can be rapidly undone by bullying. Know the school’s bullying policy so that you can insist that it be followed. If your child lashes out due to bullying and is suspended or otherwise disciplined, demand a “manifestation determination review,” which makes the school consider if a child’s disability and/or the school’s failure to implement the IEP led to the child’s behavior. Likewise, insist that the children bullying or provoking the child with ASD face consequences too. Learn more about Manifestation IEPs. Use this Special Needs Anti-Bullying Toolkit.
Don’t mistake academic ability for maturity or social know-how. Don’t assume that your child’s high GPA translates to “ready for a four-year college.” Think ahead to the necessary skills to work in groups at college, co-exist in dorms, and stay on track with academics. Fight early for advanced social skills training, self-advocacy skills, executive functioning strategie
s (e.g., organization, planning, flexibility), and daily living skills (hygiene!). Address any issues your child may have with anxiety, coping skills, and anger management. Consider, too, the maturity of the student with ASD. Many 18-year-olds aren’t really ready to leave home, and that goes double for 18-year-olds on the spectrum. A community college near home is often a great place for them to start.
Plan carefully for what comes after high school…and have a “plan B.” Having to learn about the agencies and services for adults with ASD and the laws that govern them can seem insurmountable. Nevertheless, it is crucial to do just that well before high school graduation and also to make the most of the Transition IEP process. The goal is to have a plan in place…and a backup plan. A desired agency placement may not be taking new clients, or the young adult with ASD may dislike it there. A student with ASD attending college three states away may find it too anxiety-producing and return home a few weeks after moving into the dorms. The U.S. Department of Education has a transition guide with useful information.
When you have a child on the spectrum, daily challenges like driving to therapies or getting homework done can seem overwhelming. Still, it is worth taking the time to imagine that child as a happy and capable young adult and to measure current programs, interventions, and environments against that vision, insisting on change if you see anything interfering with a successful path to adulthood.
Connie Anderson, Ph.D. (right), and Caroline Wood, Ph.D. (left), are both assistant professors at Towson University. Dr. Anderson is director of the Post Baccalaureate Certificate (PBC) Program in Autism Studies. Her research focuses on young adult outcomes of individuals on the autism spectrum. Dr. Wood’s work focuses on mental health promotion and the prevention of peer victimization and dating violence among children and adolescents with disabilities.