This is a continuation of our guest post on a mother’s perspective on her young son’s autism diagnosis. Read part 1 here. Read all our Birth & Parenting Series here. Contact me if you want to share your story!
How the Diagnosis Works
When we took our son for his physical in June, we mentioned our concerns to our family doctor. She immediately referred us to the pediatric neurologist. We were very lucky to see her within two weeks, and after a meeting with her, she sent us to the psychologist who was the expert in autism for a screening. We were able to see him relatively quickly, too, and by mid-summer, we had an answer: he was autistic, but not classically so.
When you get an autism diagnosis, there are several different “categories” you can get, the most known are Autism, Asperger’s, and PDD-NOS (Pervasive Development Disorder, Not Otherwise Specified). Our son was PDD-NOS because he was similar to the children who were fully autistic, but had some differences. For example, he is not particularly interested in the wheels on a car and does not have an overwhelming need to put things in order. He is also highly imaginative. But he does not seem to grasp social skills and has other things he does in common with the autistic children, such as liking to spin or twirl his body when he gets a little overwhelmed. The newest DSM-V will actually collapse all of these developmental disorders under “Autism” so it is actually just as precise to say our son has Autism. It is easier for people to understand if you say autism than PDD-NOS anyway since we have some awareness as a society that it means you child is disabled in some way and should be accommodated.
But Autism does not often travel alone. In our son’s case, he also has Sensory Processing Disorder, which means his senses are extremely heightened…too heightened. If you sit in a quiet room, you might be aware of a tick of a clock, but generally it is…quiet. My son can (probably, we’re not sure) hear the noise of fluorescent lights. Temple Grandin wrote about a friend who had SPD who could hear a radio when it was turned off. My son also is greatly disturbed by certain smells, so much so it’s hard to cook or eat many different foods around him. He also has taste issues where it’s hard for him to eat many different foods (this is not yet unusual as many pre-schoolers and young children do the same). When you realize how much is going on in his environment, it is easier to understand why he gets overwhelmed.
My son also has ADHD with hyperactivity. This is not unusual with people on the Autism spectrum: they are often diagnosed with ADHD, but the question is whether they have the hyperactivity or not. The psychologist mentioned the most recent thinking is that ADHD and Autism are possibly a single spectrum because they are similar in the brain because both affect executive function. Executive function is the part of the brain that handles planning, working memory, attention, inhibition, the ability to transition from one task to another, and some other processes. Basically, it’s the part that is really, really important to succeed in school, assuming your school is set up like the standard school in the U.S. You need your executive function working to focus on your homework and to put it away and find it to turn it in. You also need it to stop working and put it away for later when it’s time to go to music class. Those tasks that are automatic for some, are not so automatic for others, and that is why often classrooms erupt in chaos when children have to transition: some kids can do it without incident, but other kids cannot because of ADHD or other conditions.
Adapting Our Lives
Autism is genetic. Often when a child is undergoing diagnosis, mom or dad will suddenly say, “wait, what?” That’s what happened in my family. The fall after my son was diagnosed as PDD-NOS, my husband got the Asperger’s label. In my family, I am the only NT one (NT is “neuro-typical” and is the preferred term, rather than “normal”). Even our cats have Asperger’s (not really…they’re just cats). There is a great book called All Cats Have Asperger’s which sounds funny, but it points out the things cats do (hate to have their schedules interrupted, for example) which we do not judge them for, but when people behave that way (it is quite similar to a cat), we get mad at them. If you have ever watched My Cat from Hell on Animal Planet, having an Aspie spouse and PDD-NOS child can be like that: you learn on that show that there really aren’t bad, insane, or evil cats: they just are living with owners who do not understand their needs. Once they learn to look at things from the cat’s perspective, lo and behold, their household improves.
In my household, I have to look at things from my husband and son’s perspective, not my own. We do not do activities with my son after about mid-afternoon (ideally in the morning) because he gets very tired (it’s hard to be processing as much stimuli as he has to process). A tired child can flip out quickly. Therefore, we don’t generally go out to dinner much with him, and rarely do we go out to lunch, but he likes take-out, so we bring it home. We may want to take him to something neat in the late afternoon or evening, but we can’t, at least not right now, unless we are asking for him to misbehave because he can’t keep it together, so to speak. In my husband’s case, I can’t ask him to go to parties and stuff unless he’s sure he’ll know everybody. I need to see people; he honestly doesn’t.
We really did not know what to do at first, but consulted our library. I read books and blogs and tried to implement various strategies, but I felt like I was floundering since everyone talked about the formal PROGRAM. We did not have the financial resources for a PROGRAM, so I did my best to wait patiently for the school to diagnose my son and send him specialists. In the meantime, we all just grew more patient. The doctor had suggested that where, with most kids, you count “1, 2, 3” and then put them in time-out if they don’t comply, with a child like our son, it should be “1, 2, 3” and then help him do what you wanted him to do. It gives him the extra time to process that he needs. I have recently learned this strategy also works on husbands with Asperger’s as well (really, it’s an ADHD thing, so it works for a whole lot of people). When you want to get your husband’s attention, you say their name, and then count to ten in your head. If he doesn’t acknowledge you, you just say his name again and then deliver the message. He’s listening now. Apparently it takes that long for their brains to switch from what they are doing right now (computer, television, whatever) to what you are saying; they aren’t being jerks. We still use time-outs, but they are rare and they are for when he seriously needs to be by himself because he’s tantrumming or a safety issue has come up (too rough with the kitties or hitting one of us). And, because of the way Daddy’s brain functions, sometimes he goes into his own version of time-out, too, because he knows now when he gets too stressed he needs to be alone for a few minutes. Thus, even simple parenting strategies like time-out have to be adapted when you have a child on the spectrum.
Role of the Family
Family support is important, as you try to help them understand what his challenges are so they don’t say things like “in my day …” and imply you’re not beating your child enough or something. I’m blessed with an aunt who is an ESL (English as a Second Language, though ELL, or English Language Learners, is the newer term) teacher, so they were used to hearing about children who were different somehow and open to accommodations. As a result, my family accepted that he was different, but praised his gifts. They are open to talking about his challenges and trying to help him. My mom’s side of the family does not have teachers in it, so they seem to prefer we are quiet about why he’s different, like autism is something you are hush-hush about. My aunt’s late sister was cognitively disabled and she brought her to family events and treated her like she was a regular part of the family (offered her beers and so on) even though she lived in a group home and worked with other disabled adults. We knew she was different, but we did not talk about it. That might be why they do not want to talk about my son. We are not very close to my husband’s family (not that unusual in Aspie families), so, while I know my husband’s father and step-mother know our son has Autism and my husband has Asperger’s, they did not really react. In all likelihood it’s because his father also has it as does his grandfather. His family does not know how to react.
To be continued and finished in Part 3 on next Friday . . . .