My personal history with autism started with my son’s diagnosis of Asperger’s Syndrome at age 5. He’s 27 now, and I write this for the benefit of those parents who are coming to terms with the recent discovery that their child is autistic.
The mind races, the heart pounds, and the tears flow, trying to figure out what to do first, what to read, what professionals to possibly visit in order to put your child on the path to the happiest, most fulfilling life possible.
How can I, an average parent, become SuperParent to meet the challenges ahead? I’m not a psychiatrist!
Don’t worry, because being average is good enough, and you’ll get better without even trying. Just be prepared to make some adjustments and compromises in the years ahead.
At Jamie’s first kindergarten parent-teacher conference, we didn’t expect Mrs. Stein to say, “I suspect he’s autistic and should be tested.” You can imagine how devastating this news was to my wife and me.
It was at this time we learned that a vast number of developmentally disabled kids aren’t identified by medical professionals, but rather, teachers who are either additionally trained to identify developmental disabilities, or not so trained but can still spot when something looks “wrong” based on the norm of the classroom as a whole.
In Jamie’s case, his teacher noticed that he always sat at the exact same spot on the floor during story-telling time. Also, every hour on the hour, he held his hands up to his ears one minute prior to bell-ringing, in anticipation of the (to him) disturbing noise. And during thunder and lightning (very common in Florida), he warned the teacher of the dangers of touching the landline telephone or standing near windows.
Not exactly typical behaviors for an average 5-year-old.
Immediate testing resulted in a diagnosis of Asperger’s, and as the years went by, we surfed up and down alternating waves of despair/aggravation, and joy. The seas eventually calmed (relatively), and calm is better than either extreme end of the emotional spectrum for the parent of an autistic child.
As a first time father, I thought the initial news reflected badly on me. If you’re the parent of an ASD (Autism Spectrum Disorder) kid, don’t feel that way.
We were overly worried about the future. Don’t do that either, because we soon realized that all parents worry about their kids. It comes with the territory.
I went looking for a cause, someone or something to blame, for making this happen! It’s a fruitless exercise, but it’s one every parent of an autistic is going to go through, so don’t fight it, and don’t let people dismiss your conclusions and suspicions as worthless.
Don’t allow one partner to take the dominant role in decision-making. Through a combination of my denial and my wife’s mothering, Jamie has been severely restricted in his abilities to learn and accomplish simple tasks, like grilling a hamburger. If you have a disagreement over parenting, have the discussion then and there. Don’t talk about it years later, when the “what if we did this” does you no good, and breeds resentment in the marriage.
Always strive to make your kid happy, even if it sometimes seems as if you’re spoiling him. Remember, ASD is not a mental illness. It is a developmental disability. The failure to accommodate your child’s view of the world and his view of his own needs is damaging. If these needs are not met, then mental illness occurs!
For example, if he’ll only eat hot dogs, hamburgers, pizza and chicken nuggets, is it worth it to force healthier foodstuffs on him if it causes serious distress? Of course, encourage a varied diet. But don’t fight a battle not worth fighting and which will cause emotional harm. Likewise, if an article of clothing triggers an episode, burn it. Let him be a baby about it. If he wants to watch that DVD for the 100th time, let him. If he displays an unusual interest in or obsession with something…a “symptom” which is very common for autistics… don’t criticize or humiliate him for it.
In Jamie’s case, we suffered two years of his obsession with fire extinguishers. If we survived those two years, we knew we could survive anything.
If there’s a younger sibling involved, try to explain his sibling’s condition at a level the child can understand. It’s okay to explain that he’s “different,” and that’s why he acts the way he does. Also be aware of Big Little Brother Syndrome, where the younger unaffected sibling suffers from so many accommodations he’s required to make in the family situation and feels an unnatural, inordinate responsibility to help “raise” his actually older sibling.
It’s a scary time in these parents’ lives, and books can help in many ways. However, there’s nothing like talking with other parents of autistics for information, advice, and compassion, since they’ve walked in those same shoes.
Disclaimer: The author is not a medical or psychological professional and is offering insights into his own experiences only, with advice based on these personal experiences.