When the World Doesn’t Understand: Autism Spectrum Disorder
Parents of special needs children are often faced with the reality that comes with having a child with limited abilities. It’s pretty obvious when you see a child in a wheelchair that there is a disability. But what if your child’s disability or struggle is not as visible? Your child looks “normal”, just like any other kid, but he walks slightly funny; he runs when people try to touch him; he screams and cries when there are loud noises; he’s not toilet trained or can’t do up his shoes or talk at the same rate or time as all the other children his age.
Many parents have experienced the embarrassment of our child having a temper tantrum in the middle of the supermarket. We’ve received the glares, and perhaps either felt sympathetic for another parent victim, or cast the “why don’t you discipline your child better” type glare. But what if it isn’t a discipline issue?
Maybe you’ve experienced the “your child isn’t doing everything as well as all the other children” type comments from apparent know-it-alls and otherwise well-meaning people. These comments often come with an implied sense of blame on the parents, that they are neglecting their child in some way and that’s why their child isn’t excelling or mastering skills and abilities.
To them, your child may look “normal”, but inside, he’s so different than a “normal” child that a lack of discipline and teaching and guidance—at least the way it’s always been done or people think it should be done—may not be the problem at all. Not only do you have to deal with the reality that your child isn’t like everyone else, you also have to deal with the stares and glares and opinions of others who think you are responsible for how your child is.
Welcome to the world of parents with children with an autism spectrum disorder. Autism Spectrum Disorder or ASD is an umbrella term used to describe children with autism, Aspergers, ADD/ADHD, and other cognitive disorders. The spectrum itself includes extreme disability to relatively mild disability disorders, and each disorder on its own can range from mild to extreme. There is also always the possibility that several disorders may be the cause of your child’s behavior or difficulties.
With ASD, a normal temper tantrum can be 10x worse with virtually no hope of settling your child down. Imagine your life with three or four of these four-alarm tantrums a day and you get an idea of how frazzled an ASD parent can become. How afraid they can become of taking their child out in public because he might just have a meltdown in a public place.
We all strive to give our kids as normal a life as possible, but that effort in itself is complicated by the way an ASD child perceives the world. Everything you do and thought you knew changes. You methods of communicating change, particularly if your child is non-verbal – then comes the “Why isn’t he talking yet?” questions. ASD kids have to try so much harder to do the things other children and parents take for granted. Learning the basics of life – personal hygiene, talking, identifying with people, understanding body language, reading, writing, personal organization – takes an inordinate amount of time, and in some cases, they will never learn to do it on their own. They will always need a parent, guardian or caregiver.
So, how do you deal with someone who feels they have a right to comment on your parenting skills or that your child simply needs to “apply himself” or is not “working hard enough”?
First, remember that many of these comments simply come from not knowing, not out of the fact that a person doesn’t care or that they’re ignorant. They just simply don’t know what autism looks like. Just like you’re trying to learn about what your child can and can’t do, the people commenting really don’t have any idea what living with autism-related disorders is like. People simply assume they’re looking at a disobedient, defiant child.
Second, you have several choices:
1) Yell at the advice-giver and tell them what an insolent dolt they are and that they know nothing about raising a child with autism (or whatever disorder) and that they should just mind their own business. Really tempting sometimes.
2) Ignore them. Sometimes, this is best. Particularly, if the person commenting is a family member or friend or acquaintance who does know about the disability and yet chooses to ignore what that means. Sometimes, it’s just a matter of handling, first, the situation going on in front of you, regardless of what anyone else thinks and how anyone else is looking at you.
3) Calmly reply about your child’s disorder so that it is an educational moment. This is always interesting because many people really don’t know what such a disorder means in terms of how a child behaves or learns. For example, many people hear “autism” and they think a child can’t learn or is unintelligent or “dumb” when really children who are autistic are incredibly intelligent. You could say something like, “We’ve had a very long day today. Because Joey has X disorder, we’ve been working extra hard on this and it’s really worn him out.” Don’t apologize for your child’s behavior. Just help the other person understand (and probably the other people eavesdropping) what life is like for you and Joey. You’ll get a whole gamut of reactions. Some people will think, “Yeah, well, everybody’s got problems. What makes you so special?” Yet, others, will curb their chastising thoughts and look more kindly on your and your son and the struggles you now obviously face with activities and abilities that everyone else takes for granted. Ignore one, accept and be thankful for the other.
4) Connect with other parents of children with learning disabilities and cognitive and physical difficulties. Surround yourself with people who are going through the same thing that can support you and encourage you when you become discouraged or when ignorant comments whittle their way into your mind and have you second guessing yourself. They will remind you that your child’s behavior has nothing to do with you being a bad parent. They will remind you that you’re doing everything you can in the best interest of your child, and perhaps recommend actions or resources that you might not be aware of. They will also remind you that you’re not alone and that there are people out there who completely understand what you’re going through and can offer informed opinions on what just happened.
Darlene Oakley is a freelance writer for EmpowHER.com.
What Do Parents of Children with Learning Disabilities, ADHD, and Related Disorders Deal With. Smith, Sally. Learning Disabilities Association of America. Web. June 25, 2012.
Coping: Parents of Children with Learning Disabilities. Horowitz, Sheldon. National Center for Learning Disabilities. Web. June 25, 2012.
7 Things you Don’t Know About A Special Needs Parent. Lin, Maria. Huffingtonpost. Web. June 25, 2012.
Dealing with Dyslexia. Appleford, Kristan.
Down Syndrome. Wood, Debra.
Anxiety, other disorders more common in autism.