did you know

can be clearly identified as having characteristics of autism as a toddler, some in middle school and some not until they are adults. Four times as many boys as girls are identified with an autism spectrum disorder. The easy answer to this question is to get an assessment. Often a parent’s first contact is with the pediatrician. Or it can be with a mental health professional. Not everyone has the same level of training or understanding of autism. I’ve often heard that a parent’s concerns are dismissed or they don’t agree with the diagnosis. You are the expert on your child. I encourage parents to educate themselves. Ask questions of the person doing the evaluation about their knowledge and experience regarding autism. Autism can be readily identified in some children for others it can be more difficult. It can be especially hard in children who have Asperger’s Syndrome, High Functioning Autism, PDD NOS, or a non-verbal learning disability. A thorough assessment should include a developmental history, direct interaction with the child, a complete interview with the parent, and collateral information [from the medical doctor, school, daycare, other caregivers, etc]. For most children more specialized assessments can be helpful including speech and language assessments, an evaluation by an occupational therapist [for sensory concerns and motor skill deficits], and an assessment by a neuropsychologist [to look at information processing, cognitive skills, attention issues, etc.] and observations in other settings. While there is work being done on autism specific assessment tools there is no one “test” that can identify autism. my child was just identified with Asperger’s Syndrome [or another ASD]. now what can I do?

Children with autism can be and are misdiagnosed. Again, you are the expert on your child. Whoever is doing the assessment should listen to you. If you have questions—ask them. If you don’t feel comfortable with the assessment or your provider find someone else.

Sometimes parents are devastated by the news; some relieved. Some families need time to accept what is happening. It is a process that can be different for everyone but one that is important. Educate yourself, find the support of other parents, and love your child. There is no doubt that children on the autism spectrum are challenging. But they are also amazing. What other 8-year-old could reprogram the computer, memorize the populations of major cities, correct your math, have perfect pitch, learn Japanese, recite every line from Sponge Bob Squarepants yet have trouble lining up for recess? Their strengths are immeasurable. The difficulties occur because they have to live in a world that they don’t understand and that doesn’t understand them. Ross Greene [author of The Explosive Child and Lost at School] says that when children are given the opportunity to be successful they will succeed. This is especially true for children on the autism spectrum. There are many different interventions that range from good to bad to dangerous. It is important that parents understand the risks and benefits. I clearly explain to parents my perspective that it’s never about changing or “fixing” a child. It’s not about a cure. One bright little boy, when someone asked about curing autism said “Why would you want to do that? There’s nothing wrong with me.” I believe that we have to understand the world from their perspective and teach them the skills they need to be successful. Often people try to modify behavior without understanding the behavior. They get stuck on the “bad behaviors” but there is a reason for every behavior. This is a child’s way to communicate something such as “I’m overwhelmed”, “I don’t understand”, “It’s too loud”, “I don’t know what you want me to do”, and so on. We need to understand what the behaviors mean in order to teach them the skills to express their needs. The bottom line is that each child needs very individualized supports and creative interventions such as using their strengths and special interests. No one intervention will work for everyone. But supporting people with autism spectrum disorders is also about changing those of us who are neurotypical; changing our community to make room for individuals who have a diversity of thought. After all, things like eye contact, social connections, and many communication styles are culturally based. It’s about supporting families with understanding and compassion. what about the future?

I know many adults who are on the autism spectrum. That comes with good and bad news. First the bad news, there are some who have trouble in school, can’t find/ maintain employment, are lonely, have legal problems, and some are homeless. The good news is that there are many who attend college, hold jobs from blue collar to professional. Some are single, some married, some have dogs and some have children. They rent and they own homes. Some embrace the “label” of Asperger’s and some keep it private. Those who are most successful accept themselves and have been accepted for who they are. They have found somewhere they “fit”. They’ve constructed lives where they can pursue their passions and they know how to manage stress. The best news is that with early intervention and providing the appropriate support every one can reach their highest potential for success.

This is not enough space to adequately describe the most remarkable people I know. They challenge me to think not just outside the box but to see no box. I consider it a privilege to work with them and an honor to know them.

April is National Autism Awareness Month. For information about characteristics of autism, support group and educational information please visit the following websites:

Autism Society of America North Dakota [www.autismnd.org]

Red River Valley Asperger Network [www.rrvasperger.org]