As a parent of an autistic child, I have heard a lot of the same kinds of questions from both other parents of children on the autism spectrum, and from other folks in general.
Questions included things like: When did you first realize he was autistic? and What were the first signs? Sometimes the answers were helpful for people looking to understand their own unique autism experiences, sometimes they were simply healthy human curiosity.
Below are the questions that were most commonly asked of me and our answers today (that means that tomorrow, next week, next month, next year, next decade, as our knowledge and experience grows, the answers might be different):
When did you first realize he had autism?
We didn’t. He was meeting all of his developmental milestones and while he had difficulties with transitions and social interactions, we thought he would outgrow them.
It was his first grade teacher that suggested he might have Asperger’s Syndrome and based on that suggestion we had him evaluated privately as well as by the school. Both evaluations came back with an autism spectrum diagnosis.
What were his symptoms?
His autism manifested as
- perseverative thinking
- difficulty with transitions
- executive function challenges
- some sensory issues
- and the occasional meltdown.
We have come to realize that pathological demand avoidance is probably his neighborhood on the spectrum, and use PDA tools and strategies to support him.
What’s his “obsession”
People who have some awareness of the autism spectrum may have heard that sometimes people on the spectrum have an “obsession,” that is a strong interest in a single topic or selection of topics.
I prefer not to use the term “obsession” as it can have negative connotations, and there was nothing negative about my son’s strong interests.
While a strong interest in a single topic is not common among all on the autism spectrum, for the Navigator it was dinosaurs.
It was an ongoing area of expertise which grew and developed with him, and for us it served as a means to support him in many arenas.
What do you do for meltdowns?
First we worked to avoid situations that we learned could trigger meltdowns. If a meltdown occurred how we responded depended on the circumstances. Some meltdowns it was clear that he needed to work through it, and we let him find his own way, making sure we were there if he needed us, but also giving him space.
We sometimes had success in shifting the perseverative cycling of meltdowns by giving him juice as a new stimulus. He started asking for it, knowing it worked to get him “unstuck.”
As he grew older he was better able to identify his own impending meltdowns and focus on self-care.
Does he wander?
The word “wander” to me suggests that he might not know where he is going and that he just toddles off lost in a world of his own.
What did was decide he wanted to be somewhere else and just went without talking about it or telling anyone. It was very purposeful.
As he grew older we were able to talk with him about not just walking away, about asking us to go where he wanted instead of just taking off, and we made plans to ensure that he got to see what he wanted when we were out doing things.
What therapies does he receive?
He received special education classes at school and we also worked with him at home.
Having not received any specific professional guidance other than a diagnosis, his father and I leaned heavily on the structure the school provided through his special education lessons, and through reading a lot, learning from other families, and relying on our own experiences and pattern recognition skills until he was old enough and able to guide us as well.
Have you told him he is autistic? How did you do it?
Yes, we told him soon after his diagnosis. He was aware something was different about himself and very unhappy. We decided that knowing about the diagnosis would help him realize that he wasn’t stupid for not being able to function in the first grade classroom.
We told him by wrapping the conversation around his strengths and the strengths he gets specifically with his autism.
How do you manage the IEP process?
I know a lot of people find the IEP process to be a horrible experience, and it can be. For the most part, though, for us it was mostly a positive and constructive process.
The Navigator’s schools were consistently willing to say yes – from the top down and bottom up – to our requests or to find a way to meet the needs in the request if our initial ideas were not workable.
That being said, I would be lying if I said it was effortless for me. Even though meetings are routinely positive, I do frequently feel exhausted and emotionally drained afterwards.
I have learned not to schedule anything taxing or demanding on days we have an IEP meeting.
Do you have any advice for IEP meetings?
Because I am an attorney, people sometimes assume I go into IEP meetings with guns blazing. I do not.
For me, starting with an adversarial tone is frequently counter-productive and I prefer to start with the assumption that we are all equals on a team with a common goal because I know that by working together we are more likely to achieve our goal.
If your goal is to get a bird off a fence, don’t first pull out a bazooka. Try waiving your arms at it first, then you can move up to more and more powerful options to achieve your goal.
As Clara Oswald on Doctor Who says “Never start with your final sanction; you’ve got nowhere to go but backwards.” That doesn’t mean I can’t or won’t “lawyer up,” I simply don’t start there.
Probably the most valuable piece of advice I received is this:
Set the IEP meeting when you don’t have to be anywhere or do anything for the rest of the day.
This means that as you sit in the meeting, you have all the time in the world. Her advice was most valuable to me as a reminder that even though the school district is bigger than me and appears to have more power, I am an equal participant. My input and agreement is as important as that of the school.
What do you think causes autism?
I don’t know. I think that in the same way that autism manifests on a spectrum and uniquely in each person, the causes of autism are likely to be equally complex and individualized.
Yes, there is likely to be discovered causal themes – genetics, exposure to toxins, etc. – but I don’t think a “silver bullet” single cause will be discovered.