The Best of Both Worlds
Share your inspiring, hopeful story of how autism touched you.
The Best of Both Worlds
“If you’ve seen one child with autism, you’ve seen one child with autism.” As a parent of two on the spectrum, I could not agree with this more. There is a certain loss that often feels irretrievable when first faced with a diagnosis. Shortly after being given two diagnoses back to back, I came to realization that I was given the opportunity to understand an enigma and parent in an extraordinary way.
The challenges I faced at the beginning of this journey for both of my boys were equally overwhelming. Nevertheless, the distinction between my boys remained apparent from day one. I admit, before I was able to fully accept my blessing, hope was not always there. I often heard that Early Intervention worked wonders on children who were diagnosed at an early age, and I eagerly expected rapid results. It is difficult to watch your child exhibit mannerisms that no longer seem “cute”, but rather harmful. After a year or two with hardly any progression, what little hope a newly diagnosed parent builds begins to fade.
When my older son began to blossom into what is commonly referred to as “high functioning”, I naively assumed his brother would follow in his footsteps. Along with a high-functioning child come amazing qualities and little quirks (echolalia, perfectionism, etc.) that I embrace in my son whole-heatedly. However, along with a low-functioning child come violent self-stimulatory and self-injurious behaviors, with little to no communication or self-help abilities.
As challenged parents we are in tune with our frustrations, as I’m sure our children are as well; after all, how often do are we faced with the screeching sounds of frustration from a fierce yet angelic child who just can’t find it in them to say “mommy”.
Julianna Gil de Lamadrid
College Point, NY
A couple of years ago I read this article somewhere. After reading this article written by a mother with children on the autism spectrum, I was compelled to write an opinion on the subject . When I wrote this article originally, I stated that I may change my opinion, but I have not, so here it is, once again. I have an opinion I’m not so sure all would agree on . I even started to change my mind until my gut moved me to keep searching. I can only speak here of my own work because I have not researched others results. The popular solution for non-verbal kids, it seems to me nowadays, is some type of communication board. These devices seem to not only help with communication, but also relieve frustration and sometimes significantly improve behavior by relieving frustration for children who can use them. However my question is , with all the recent research on the elasticity of the brain, if there is no physical reason for lack of speech, is it good enough to stop at communication here? Why not continue to strive for some kind of speech? Personally I have yet to see an IEP with continued speech goals where communication devices show some success.
This is where this posted article comes in. High functioning versus low functioning. To me, “high functioning” means this child has more control over their responses than the “low functioning ” child. To me high functioning vs low functioning does not tell of actual cognitive ability. It tells me that the high functioning child finds it easier to tell or show what they know than does the low functioning child. Regardless, why give up on speech if there is elasticity in the brain and no physical reason for lack of speech.
Here is my analogy; If you compared a 5-year-old with no musical exposure to Mozart, is there reason to say that 5-year-old will never have any musical ability ever? What if he learns to sing “Twinkle Twinkle Little Star,” but if you ask him to play a Piano Sonata, he screams and tantrums. Yet every time the radio is on, you see him stop and listen attentively to the piano part, no matter how difficult it is to distinguish it in that particular song, should you give up on that Sonata?
I almost gave in to no speech when I worked with a little boy for 2 years and we were still no closer to speech than the day he started. Eye contact? Definitely highly improved. Attentiveness? Almost a complete turn around. Affect? Huge, huge difference. Joint attention? Wow, playing tag in the store with his brother. But speech? Maybe I should be satisfied with a ll the other significant strides we had made. But a mother’s words wouldn’t let me do that. This mother said “I tried it one day. I went without speech for an entire day. It was very frustrating”. Sure, there were other ways to communicate, to make the point or even tell someone exactly what she wanted. She could write it if she needed to. So I kept going. I researched and listened. It was not only speech that had come to a stand still but also only a certain amount of motor planning was under his control. We are not there yet, however we have made it to speech approximations. Yes, there is still more work to be done.
I will have to recheck this article in 5, 10, 15 years and see if I still feel the same way. I feel that even poor speech is still better than none at all. It is immediate and reactive. Only Mozart can begin with a sonata. The rest of the world has to start with one note at a time, a little every day. The rest of us have to carve out our own musical abilities, our own brain pathways to tell those fingers where and how to move, with time, persistence and practice. If we really have a desire, with persistence and usually guidance, we can learn that sonata or at least learn as much as satisfies the desire.
I believe that those of us who have been given the job to help autistic children develop owe it to these kids to give them the continued opportunity for speech. If the world was unpredictable, scary, and frustrating wouldn’t it help if we could say “stop” at least. Don’t start with words or sonatas. Start with any sound, work toward a pattern first, maybe and interval. Start where the child is, go from there. They will tell you where they are. Ask questions, research, collaborate but don’t give up on some sort of speech! It is just my opinion. It is my opinion that which comes from the inside of us is much more satisfying than what we produce outside.
Antoinette Morrison MT-BC