I have never had strangers throw me dirty looks, accusing me of being a bad parent and my son of bad behavior, but I have heard of many autism parents having to deal with those reactions. Especially when they are out in public and their child starts screaming because they turned the wrong way in the mall or the restaurant was out of their favorite food. Matthew has always been pretty easy out and about, he did get upset if we drove home the wrong way but no one else was around so I never felt judged.
But recently I did feel judged. Let’s just say I was made to feel as if I don’t know how to parent my child, and worse, to feel as if my son is just a bad child; acting out and not listening. It is nearly impossible to explain to someone that your child’s brain just doesn’t work the same as average people. That for a manner another child can pick up if you mention it too them only a handful of times, it may take Matthew a hundred times to hear that same instruction before he can internalize it and do as expected. If you tell a normally developing child not to take food into the living room they may be able to generalize that statement to include drink or even someone else’s home, whereas Matthew would need you to specify each and ever scenario, and he may still not carry out your wishes. He isn’t being bad or rude, his brain simply doesn’t work that way. And God forbid if he is overstimulated. You might as well forget getting new behaviors out of him them. His mind and body just aren’t capable of understanding and self regulating during such exciting and stress filled times.
Yelling and belittling him doesn’t help the situation, although it is what people may default to doing. It only makes him feel bad about himself. But so many people simply get angry with him instead of familiarizing themselves with his disorder and what kind of struggles he deals with daily. So here is some information on what it really means to have autism.
Psychiatric disturbances in autism include social deficits, social withdrawal, shyness, depressive traits, mood swings; flat affect, anxiety, schizophrenic & OCD traits; repetitiveness, lack of eye contact, avoids conversation, irrational fears, irritability, aggression, temper tantrums, and impaired face recognition. That is not your normal childhood problems and it explains why many of our children do require different and specific treatment, and unique understanding my loved ones and care givers.
Speech, language and hearing problems are pervasive and include delayed language and failure to develop speech, dysarthria , articulation problems, speech comprehension deficits, echolalia, word use and pragmatic language problems, sound sensitivity, mild to profound hearing loss, and poor performance on verbal IQ tests. These encompass so much of daily life, yet children with autism may not be able to do these things or do them well with consistency.
But autism doesn’t stop there. The sensory abnormalities associated with autism are abnormal sensation in mouth and extremities, sound sensitivity, abnormal touch sensation or touch aversion, and vestibular abnormalities. This means that the normal everyday input their bodies receive from the normally mundane can be extreme for autistic individuals. Imagine trying to be considerate and compliant if you body was tingling unpleasantly, you couldn’t tell where your body was in space and everything you saw, touched, heard, smelled or ate was unpleasant and uncomfortable.
Most of the above issues aren’t visually apparent, but the motor disorders are and they are often the symptoms most people associate with autism. They include stereotyped movement such as arm flapping, jumping, circling, spinning, rocking, myoclonal jerks and choreiform movements. They have poor eye hand coordination, limb apraxia, and problems with intentional movements. They may have abnormal gait, postures, trouble walking, crawling or sitting, they could have difficulty chewing or swallowing and may have abnormal posturing or toe walking. So every single thing they tried to do with their bodies may be a chore for them. They may get frustrated and sad by their struggles.
The cognitive impairments with autism can be difficult to deal with and to understand. They include poor concentration and poor attention, poor short term, auditory and verbal memory, poor visual and perceptual motor skills, difficulty carrying out multi step commands, word comprehension difficulties, deficits in abstract thinking and symbolism, difficulty understanding others mental states, sequencing, planning and organizing. This can be particularly frustrating and requires a lot of patience, understanding and love from those instructing and caring for individuals with autism.
Our kids can have self injurious behavior, agitation, grimacing, crying and staring spells. They can be sensitive to light, have blurred vision, have poor eye contact and lack of joint attention. They have gastrointestinal imbalances ranging from mild to severe. Seizures are not uncommon. Abnormalities in neuro-chemistry can be present, as can immune dysfunction. Autism is truly a pervasive disorder and effects more than just their social behavior.
Sadly the list goes on, but I think the list has grown sufficiently long to make my point. Children and adults with autism think and experience differently than we do. Expecting that one can treat a person with autism like everyone else is misguided. One can have the same ultimate goals for our ASD children as we do for our neuro-typical children, but the route by which we achieve those goals will be different, convoluted, confusing and sometimes painful.
Instead of judging families and individuals dealing with autism, it would be helpful to everyone involved if you could arm yourself with knowledge and understanding. These things might not make it much better when the child bites you for no reason, or is talking uncontrollably, but knowing that they aren’t trying to be bad and that this may be out of their control can help you deal with the situation. And it may keep you from giving someone that look that says ” You are a terrible parent allowing your child to behave like that. And you child is horrible.” Instead maybe you would give them the look that says ” I understand this is tough and I’m here to help”. Or better yet you might just walk up and lend a hand. Trust me, these families are dealing with more than you realize and witness on the surface. Their child is struggling with so much more than you can imagine or witness with just your eyes. Much of their behavior is out of their control, even though it seems like the most simple of tasks for other children.
Just keep in mind that you really can’t judge a book by its cover, or autism by the individual’s looks.