Acceptance issue with Autism : Parents and the World.
Addressing the topic of acceptance with Autism (ASD) we must look at two key areas of acceptance. The first issue is acceptance by the family members of the diagnosis of autism. The second issue is the acceptance of the individual by the world or society. These two issues are interrelated. They continually impact each other. Also, within each of these two issues are other concerns that make up the issues.
Receiving the news that your child or other family member has been diagnosed with ASD is complicated. For some people this may come as a shock. Most people know it is a possibility since something motivated them to bring their child for testing. Some people have been sure that their child has ASD and they have just been waiting for the official diagnosis. Many emotions can be experienced when receiving this diagnosis: sadness, despair, denial, fear, anger, relief. Parents may feel all of these or just some. They may get stuck in one feeling. Some parents want someone to blame, some may not believe the diagnosis, most are afraid of what the future holds for them and their child. Some parents feel relief in finally have an answer. Others may feel that they can bargain to make a change. Hopefully, wherever the parent starts they continue to move through these feelings towards acceptance.
The idea of acceptance in such an important matter can be hard for people. Acceptance means taking, receiving, and approval. But that doesn’t mean you have to stop there. Unfortunately some people are misled into thinking that accepting the diagnosis means believing that their child will not learn, talk, have friends, etc. It doesn’t mean that there will be no growth, development or change. Acceptance means that you acknowledge the information. What you do with the information is up to you.
It means acknowledging that the life you had imagined for you and your child will be different. With acceptance of the diagnosis comes awareness and learning. This helps to understand the disorder and why the child behaves the way they do. Through this understanding and learning a person can help their family member.
Autistic Spectrum Disorder is described as a pervasive disorder. That means it permeates through many parts of a persons behavior and processing. It affects processing and storage of information and stimuli. It affects how emotions are perceived and expressed.
It also is pervasive in the way it affects how the person with ASD and their family are perceived by others. ASD isn’t contained to your home. It goes everywhere with you. It goes to the places you expect: OT, speech, and psychiatric appointments. But it also is with you to the grocery store, the park, the church pot luck and an afternoon with friends. It doesn’t stay behind when you are trying to rush out the door or when you want to go out to dinner. It is there, always. This provides plenty of opportunities for people to see its effects. Unfortunately many people still don’t know what ASD is or how to recognize. Furthermore, even people who have some awareness of ASD don’t understand what is happening when they do see it.
Someone with ASD can often appear just like someone without ASD. Then again, it can be quite obvious that they are not.
Some common behaviors associated with ASD include: an individual sitting quietly at a table lining up a group of objects. A person rocking back and forth, bumping his head against the wall. A person involved in a conversation that seems one sided or inappropriately focused on a single subject. A person yelling, hitting themselves and biting a person who is trying to help them.
Some of those behaviors may seem acceptable for a young child; even the last one may be typical behavior of a child having a tantrum. But what if the person displaying those behaviors is older, say 8, or 15? People will then be more inquisitive.
People do look when behavior is what we consider out of the ordinary. They stare, grumble or even offer advice or criticism. People are easily annoyed, uninformed, ignorant, and meddlesome. They can also be curious, uncomfortable with their lack of understanding, well meaning and even helpful.
I know these things to be true. I am the parent of a 12 year old with ASD. She has been the 3 year old playing with a choice few dog toys, lining them up in the exact order every time. She has been the 2 year old banging her head on the floor; and the 8 year old banging her head. She has been both the 4 year old and the 10 year old biting, yelling and hitting. She has been the person at all of these ages having the conversation that is somehow off and unsettling to the other participant.
People have not noticed some of the things, sometimes. Others have glanced at the repetitive or annoying behavior. Some folks have changed seats or turned and walked away from us. More than I ever thought possible have criticized her behavior or my parenting.
We have received smiles, praise, stories of similar experiences, a gift of another toy dog, and on very special occasions; the gift of another person who knows exactly how to interact and engage my daughter.
I am a parent who has felt anger, great sadness, denial, guilt and hopelessness. I have also felt relieved, justified, and motivated.
I have found that generally the more acceptance that I show towards my daughter; the more other people do as well. That is not to say that I don’t encounter people who are obviously uncomfortable or agitated with my daughter. I do, but I have learned to accept them. That doesn’t mean I have to like it, I just don’t let it ruin my day. Usually.
If I am having a day where my acceptance of her behavior is challenged it generally has a negative impact of the reaction of those around me. It encourages people to give criticism and advice that are inappropriate.
Not everyone in this world is going to be accepting and understanding of my daughter and her challenges and gifts. Her life will be filled with difficulties and joys just like the rest of us.
My daughter will receive acceptance and understanding from me and others close to her. From us she will learn acceptance and understanding of herself and others. Hopefully, together we can teach it to more people.