Thanks for stopping by. Today I’m reflecting on some sensitive topics as I set up services with a new counselor, process an unanticipated discharge from services, and pray I can keep my oldest awake long enough to complete today’s school assignments.
Will my child outgrow Autism?
This is the question you ask the pediatrician if you’re brave, or yourself if you are in the shame/guilt spiral, because you really want to know if this is going to be your new normal. Forever.
The world is full of “Autism Awareness.” The general public understand Autism up to the point that when they see someone like my middle child, Ollie, they know something is going on with him. They identify it as not “normal” and you give him a wide berth. Maybe even stare, because how he is filling the space in a way that doesn’t make sense. But how Autism impacts my first child, Claralaine, and my third child, Aaron, is harder to see. Professionals need multiple visits to see it and family has to let go of their unrealistic expectations to accept it. This is true regardless of whether it is diagnosed or openly stated. They have Autism and no matter what they accomplish it will still be there. It’s in their wiring.
Clara and Orey look completely different from their brother and their characters are diametrically opposed one to the other, because of the nurture aspects of development, physical gender impacts like estrogen/testosterone, and the whole host of family/community dynamics that impact learning. So my daughter tends to withdraw from the world when she is challenged and my son tends to explode. Judgy McJudgers will have all sorts of ideas about their behavior when they see it play out in public, but it is rare that they are met with compassion or understanding. Even in the age of tolerance people look at life as a study in comparisons and if they don’t know they don’t know. Even so all three of these children are on the Autism Spectrum and not one of them will outgrow it.
The condition or syndrome presents differently in each of my three children. As they expand their worldview and learn coping strategies symptoms will improve. At some point they may lose the diagnosis if they mature to a point that Autism no longer interferes with their daily living. But that has more to do with the politics of diagnostic conventions than reality. For the sake of argument and your peace of mind, just accept that the answer to your question is, “no.”
What is Autism?
Why am I so blunt? Because this question wastes time and keeps us from the true work we have been called to in raising a child with Autism. Autism is not an illness. It is not a phase. And initially it doesn’t matter what it is. The newly diagnosed child is in crisis and we need to break down the child’s skill deficits and roll up our sleeves. This is why the majority of the research is looking at early intervention, because the sooner you can remediate developmental deficits the more likely the child is to shorten the gap between their developmental and chronological ages.
Conventional wisdom says the best place for neurodivergent children to learn is alongside typical peers, because modeling remains one of the most powerful tools for reaching the mind of a child with Autism. The level of mental rigidity these children live with requires us to discreetly teach each component of a skill. They do not have sufficient perspective taking skills to interpret instruction or extrapolate outcomes, but if they see it most often they can do it.
Can Autism be cured?
When you come across someone who says they “cured” their child. Step back and examine the circumstances. Be highly skeptical. Parents that use the word “cure” haven’t resonated with the syndrome long enough to accept the gravity of the diagnosis. They see it as a discrete disease or condition that is either present or not present. And I argue that based on lingering stigma they want to dissociate themselves from the diagnosis. That’s why people persist in using the Aspergers label even though it has been removed from the DSM-V. They are attempting to draw a line between their child and a more severe case like that represented by my Ollie, because parents tend to want their children to live the dream and they are not emotionally prepared to mourn that unrealistic expectation.
By maintaining the myth that their child has been cured, they are avoiding the reality that each developmental age comes with new challenges and depending on the sophistication of a child’s coping skills and support network there could be a skill gap that presents at any time in the lifespan that they will need outside support to navigate. They are not looking down the road to anticipate the need for skills that can be taught now and offset difficulties, arguably they are setting their children up for failure.
How can this be? Because what you see in a “cured” kid is a child that is pretty high functioning and was able to learn enough masking behaviors and/or coping skills to appear typical. They were not cured, they did not outgrow it. They are still them and if next year’s math teacher has it out for fidget spinners and that’s how they got through class you are going to see the anxiety and challenging behaviors return. Also, by not being open with them about why their life is more of a challenge we are not honoring their efforts and they are more likely to internalize insecurities when they have to work harder to be “normal” than their peers.
Is there any hope for someone with Autism?
The hope for someone with Autism comes when we set aside our comparisons and look at the individual. Autism is an operating system. Each operating system is different, but they are consistent and once you learn how that person operates you can adjust the program for the desired output by introducing new subroutines. This does not make them trained performers or machines without heart, but gifted individuals who typically are habit driven and expand their repertoire as circumstances require. There is power and hope in that for all on the spectrum regardless of severity.
When we received our initial diagnosis the boys were 18 months old. It wasn’t a full Autism label, because at the time the diagnostic criteria held off until the social aspects could be confirmed. It was 2010. How it was explained to us then is completely different from how it is explained to us now and is most likely nothing like how it will be discussed in the future.
What we are really looking at when we dissect the symptomatology of a person living on the spectrum is individual brain function. That is why in the early days the “condition” was treated like a one-off and the declaration, “if you’ve met one person with Autism you’ve met one person with Autism,” was bandied about as a way of sidestepping the fact they didn’t have answers to our questions. They couldn’t really tell us what the diagnosis meant for our child and because each child that was identified as “autistic” looked so different from each other it was hard for the general public to accept the diagnosis as legitimate. Eventually it became so much noise we stopped looking for definitive answers and just lived.
So, I give you permission to live. You are the day-to-day caregiver. You know what you are experiencing and are the best judge. This is what you are dealing with now and this child needs your help regardless of what anyone else thinks. The importance of getting to a label and understanding the nuances of the diagnosis truly is only a tool for targeting therapeutics, developing strategies, and processing insurance claims. The more of an expert you become on the patterns in your child’s behaviors the more you are able to compartmentalize their conduct and tease the function of personality and ability out from defects in their operating system to help them grow with their Autism and realize their potential.
Appreciate you spending a moment here with me at Atypically Cultivated where I am looking to share how we are working to craft a nourishing home, build community, and expand potential in ourselves and others. It is always a challenge, but it does get easier.
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