The biggest barriers with autism are not the ones the children and adults face; it’s in how others perceive them and what they think of autism. Changing the mindset of the populace that does not have autism is much harder because it has to be common knowledge. Advocates for autism have to bring it to the attention of other adults and parents who have some connection or acquaintance with autism. Once autism and all its facts are out on the table, we can begin to change the thinking about autism that still pervades society.
From there people will be able to see that autism doesn’t equal mental retardation. It doesn’t mean that the children and adults who have it are doomed to a life of living with family or a burden on society because of their different and differing abilities. Even those with severe autism can learn a simple trade, although the training for it would be the most difficult part.
To really rethink autism is to understand its impact on each individual affected. The spectrum for ASD orders is so vast, that no two people on the spectrum will have the exact same challenges and abilities. The diagnostic criteria alone cover eight different areas of development, and a diagnosis is made when there is a significant delay in three of those eight. The computations on that alone would give people some pause and food for thought!
A friend’s son has autism, but he is high functioning and verbal. He takes cello lessons with a group of average peers. He does very well in playing the instrument, but the teacher doesn’t know how to teach him because the teacher himself hasn’t much knowledge on the subject or experienced it in some way. The teacher asks the mom how to teach the little boy. The mom replies that it isn’t that hard and there are only a few things the teacher needs to remember:
- Speak softly. Her son’s autism responds better to soft, gentle tones in the voice.
- Patience is important.
- Allow the boy time to speak, as he feels validated and respected as a person when he is allowed to talk.
- Expect more, never less. Autistic kids like her son have a keen sense of what is expected of them and will do less if they think that is how they are perceived.
The teacher thanks the mom for the insight, and exclaims he is surprised at her own willingness to help her son. The mom is surprised that the teacher would think that a mother would give up on her child when he faces challenges. This is the way we change people’s thinking, little by little, person by person.
Of course, this is only one scenario out of thousands, but it is very common to run into people every day who don’t know what autism is or how it affects children and their families. Some mothers have faced harsh criticism for not giving in to their children’s tantrums when people do recognize the autism, and fathers have been belittled for expecting their autistic child to do more. When people don’t know the child has autism, they ask harsh and unfriendly questions, such as “What is his problem?”, “Is he retarded/crazy?”, and “Why don’t you put him on medication for that?” In every situation the problem isn’t with the child, the mom or the dad; the problem is with those who don’t know, don’t know any better, and don’t know how to appropriately respond to what they are witnessing.
The outsiders need their thinking changed. Knowledge is power and only advocacy can grant them the knowledge. To get others to rethink autism, the advocates must first project positives of autism, e.g., that these children and adults are able to do amazing things on a virtually gifted level. What might have stunted their development in one area jump started and rocketed another to genius level heights. Focusing on spreading the word about autism, what it is, and the positives of the disorder begins the conversation with the outsiders who then enter into our circle and begin to understand, hopefully with compassion, what it means to have a child with autism or be someone with ASD.
We are not looking for pity. We want to share, and change the perception of others. This is how we start.