Autism for Dummies – part two
Again we must remember the spectral aspect of Autism. If we view it like a rainbow in our minds we can follow it through all the way across. We see mild at one end, and the bigger parts all edging toward the middle, all the way to the furthest extreme side. So when we speak of these extreme kids on either side they are the tiniest grouping to our numbers.
The attitudes and ideas of Autism have changed over the decades. I tracked as far back as the 1950’s. Back then it was thought to be a mental illness and it went by the name Infantile Schizophrenia. It was thought to be a parenting problem. A phrase was coined then “refrigerator mothers”. It was believed that a lack of love or coldness from the mother created these problems in the child.
Moving through the 60’s and 70’s more understanding was gained as the numbers of Autism births began to grow evermore. But, it was not until the latter part of the 70’s and into the 80’s that much true compassion, public awareness, and real progress was even begun in Autism care. Before that, these children were often shelved. Sent home with their parents with not much hope, education, or real therapy offered. Parents were encouraged to find permanent placement for the children they were told that they themselves had damaged. There was shame attached in Autism.
What does Autism look like to us? We have a child classed in the severe range. But, we see him as solidly in the middle of the rainbow. He was missed diagnostically for a long time. Though I now know we brought him home Autistic, some families say that they did not know until somewhere between one year and two years of age that Autism was present in their children. For some families Autism presents suddenly as if out of the blue in a regression. A child who was talking or communicating suddenly stops. Eye contact and emotion suddenly dim. Tiptoe walking and hand flapping begin.
I knew when my son came home to me that he was different. And after diagnosis I could easily go back and pick the ways he showed himself from the earliest age. Of course in the living of it we didn’t know until after. We had thought he had a serious solemn personality and a speech problem. We even thought for a time that perhaps he was deaf. Then he had a sudden spectacular regression and flare at just before two years and there was no longer a trace of a doubt. Here, if you are wondering, is where the heartbreak of the Autistic family lives. In the moments your child spins away from you where he had not before.
My son has speech issues. He has probably fewer than ten words. And those are not used with any degree of constancy. He does not know or have a real concept of self or of you. He does not know to say “I want” or “you want”. He does not point. He makes limited eye contact. He does not reliably respond to his name. He does not seek out touch though he is warmly receptive of ours. He does not seek us out to share all of his experience. He is okay with solitude though he warmly loves us. He is not always connected or present with us or with you. His attention span is very limited and sporadic. His sleep is disturbed without medication he will sleep only 4-6 hours in a 24 hour period. He is a tiptoe walker, a hand flapper, and a constant noise maker who is always moving. But, for my heart, the single most devastating symptom my son has, is his near total lack of speech.
I long to hear his voice and his words. I want to hear him say my name or tell me he loves me. This is often said by families to be the most painful show in Autism of all. I am a mother who has never been called mom by the son I love so very much. Autism is stealing the voices of a whole generation of children. Special abilities? We are told our three year old son is reading. He has read a few words off of paper with no pictures or recognizable symbols. He has a very acute understanding of our spoken word, and when he is connected, he understands at a far advanced level than his years would mark him able to. And all of these things place our son solidly in the middle of the Autism spectral rainbow.
The Autism rainbow is long and wide. And while we are walking it there is a loneliness that is untouchable. A sadness that widens the distance. Sometimes it feels impassable. And this disorder is so misunderstood. There is sorrow in watching the numbers grow but as they do there is also the hope that someday it will strike just the right family, or finally enough people, and real change, research, and answers will begin. And always there is the thought that I must speak out and add my voice in case my son, or your child, never is able to. There is a problem. Something is wrong here. Genetics or environment matters little to me. I can change nothing as it pertains to my family. It is what it is for us.
In the end what matters is finding out what is happening to our children. Autism is real. We as a people need to stop, pay attention and ask why. Be patient with the family who just found a spot on the watercolor rainbow it is a life changing confusing place to be. If you grow tired of hearing about it because it doesn’t affect you stop for a moment and remember that we, the family of those who have it, have to live it every single day of our lives. And our days can be so very, very, long.