Aspergers101 for the Parent

As neurotypicals, disappointments come early in life. We learn quickly that all we desire is not all that is intended for us. We learn, through a trail of unrealized dreams, to be content with our lot or find another pathway toward our goal(s).

Having a child on the autism spectrum redefines the above lesson. Managing your ASD child’s crushing blow of disappointment comes with a different manual altogether. When it comes to disappointment through deceivers and manipulators…those with an Autism Spectrum Disorder are susceptible to exploitation. ASD is, at its core, a disorder of social functioning and cognition. Just saying old phrases like, “That’s life” or “Pull yourself up by your bootstraps” or “That’s how the ball bounces” makes no sense to them and sets them off into further confusion and strife. Their brain is wired differently so their expectations and heightened sense of right and wrong may bring on pain when the expected turns unexpected. Knowing how to help them is first to understand that your autistic child is wired differently and being lied to will take more than standard sayings to overcome. In other words, like everything else in parenting a child on the autism spectrum, it may take a well thought out talk but you can relieve your child’s mind….and yours by a few steps.

Their brain is wired differently so their expectations and heightened sense of right and wrong may bring on pain when the expected turns unexpected.

-Jennifer Allen

Manage their Expectations

In looking back on raising a son on the autism spectrum, this was and still is an everyday activity. Managing their expectations takes time, communication and preparation. My part as a parent has waned a bit as our son ages, as I am beginning to see how he attempts to prepare himself for daily potential challenges. This preparation begins with a comforting knowledge of facts. Let me give an simplified example but one that you can plug most any upcoming event into. Remember, this is just about managing the small unknown(s). We will get into the larger scenarios later.

Here is the situation: Church is going to be extra crowded on Sunday because it’s Easter Sunday. We then think of the challenging ramifications that overcrowding may bring and discuss solutions.

The Challenges Discussed:

  1. We may not be able to sit in the same pew/area we usually do
  2. There may be louder sounds with more children in the service
  3. It may take us longer to go eat lunch as crowds are larger during Easter Sunday at restaurants

So we go over the potential challenges and discuss the following choices to avoid disappointment, expectations or meltdowns:

The Solutions Discussed:

  1. Let’s leave extra early to get our usual seating -or- would we take the opportunity to sit elsewhere and see what that is like?
  2. With the onset of more crying babies, would you want to use noise-cancelling headsets? Go to foyer if it gets too loud? Other suggestions?
  3. Since it may take longer to get to a restaurant can you set in your mind it might take 30 minutes longer than usual to eat lunch? Would you rather forego crowded Easter Sunday restaurant crowds and eat at home?

The challenge/solution exercise helps to prepare your child for what disappointments might be just ahead. The less amount of surprises the better for a factual mind. This activity prepared our son throughout his young life and now we are starting to see him work through this for himself as an adult. This practice certainly helps prepare for the unexpected but what happens when they are promised something and it’s never delivered. Or a blatant lie is told to them and they keep trusting the source will do as they say but you realize they never will? In other words, how to you explain to the pure believer that the world is corrupt and sometimes people are going to lie to you. Most deal with this topic when their children are very young, but to the parent of a child with Autism it’s ongoing. You know they take everything literally and hidden meaning or ulterior motives is a concept most difficult to grasp. For the autistic brain it’s confusing, painful and sometimes paralyzing.

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Hosted by the Texas Governor’s Committee for People with Disabilities, presenters offer expert advice for solutions to common workplace challenges such as sensory, social, and thinking and processing in this previously recorded webinar. Jennifer Allen with Aspergers101 offers insight into the most common workplace challenges experienced by people diagnosed with Autism Spectrum Disorder and provides specific suggestions for accommodations. Take this opportunity to hear more about how Vocational Rehabilitation and local workforce boards, public universities, and private employers have discovered how to successfully balance the needs of the business’ bottom line with the employment goals of people with Autism via Texas Workforce Commission’s Jennifer Hines. Packed with a powerful punch, Jenn Byron-Ross/Director of Recruiting at grocery giant H-E-B, shares the company’s best practices and how they are attracting talented people on the Autism spectrum for jobs across the organization—from bagger to software developer. There is so much valuable information for both the employer and the employee packed into this webinar. Be sure to look below the video for some downloadables and/or materials provided to you as a reference from the webinar!

Presenters:

Jennifer Hines with Texas Workforce Commission/Vocational Rehabilitation revels how local workforce boards, public universities, and private employers have discovered how to successfully balance the needs of the business’ bottom line with the employment goals of people with Autism.

Jennifer Allen with Aspergers101 offers insight into an employer’s basic understanding of Autism and Asperger Syndrome while discussing the most common workplace challenges experienced by people diagnosed with Autism Spectrum Disorder and offer specific suggestions for accommodations.

Finally, the Director of Recruiting at H-E-B, Jenn Byron Ross, shares best employer practices and how they are attracting talented people on the Autism spectrum for jobs across the organization—from bagger to software developer.

Resources:

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Over the years one question is always asked at the end of every autism workshop Sam and I have been privileged to present. To paraphrase, it goes like this:

The Question:

“Sam this question is for you. We just found out our teenage son has (this part she whispers) Autism. I am unsure whether to tell him, his siblings or anyone else for that matter. What are your thoughts…should we tell?”

Since the question is directed at Sam…all eyes are on him waiting his response. For this reference, the woman asking the question is a composite of all the mothers who’ve asked this of Sam more times than I can count. She stands with tears in her eyes and is truly grappling with the recent diagnosis of Autism yet has hope after hearing Sam talk about growing up on the spectrum. She relates, she hurts and she hopes. So answering this common question takes thought. Samuels response is why I am writing this post. It comes straight from the heart of a young man who understands what autism ‘feels’ like. He is able to offer an insight, perhaps, into her own sons inner workings, workings that the parent has yet to grasp.

So when Sam, on his own, offered up his opinion it seemed appropriate to share with you now as it always seems to sooth the inquiring Moms fears.

The Response:

“Why would you not tell your son of his diagnosis? Believe me, he knows he is wired differently. He already knows he is not like his peers and probably feels like an outcast. It might even be a relief to know he has autism as there will finally be an explanation for most everything he is experiencing such as frustration, social loss and even physical pain. At the very least, he (and you) can begin to face the challenges through treatment(s). The diagnosis of autism isn’t a death sentence. It’s a road map of the brain. Understand the brain and map out a direction. Don’t think of Autism as a weight…think of it as a pair of wings in which to fly. ”

Inevitably, the Mom appears relieved and hugs Sam as if to thank him for permission to let the word, Autism, come into their lives. I know because we started from the same place.

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I was inspired to share the story of the ongoing relationship (both struggles and triumphs) of my husband Herb and our son Sam after creating the below series of photos.

Parenting someone diagnosed with High functioning Autism or Asperger Syndrome begins as a challenge to the adult who had expectations about who their children would be.

Those expectations may be for their son/daughter to be just like them, or to become the person they never were. But these preconceived notions must be disposed of for the child’s success. This is the case with many families facing the newfound diagnosis of Autism or Asperger Syndrome. The high divorce rate among parents with a diagnosed child is testament to the fact that it can be a great struggle that places strain on all areas of life.

When Sam’s Autism diagnosis was revealed to Herb and I some 14 years ago it was raw, new, and life changing to say the least. Our first-born Samuel was struggling in elementary school and until that point we didn’t know why. The Autism/Asperger fact sheet described each misunderstood challenge Sam was displaying and this allowed us insight into creating better communication with our son.

Herb Allen (l) enjoys his sons (Sam) humor.

Herb is a man’s man.

His rugged good looks and “pull yourself up by your bootstraps” mentality would not seem a sensitive fit toward parenting a son such as Sam. Sam is unique. But not even Sam knew how he fit in to the world around him, much less how to blossom under a father like Herb.

Once the shock of the word “Autism” wore off, it was time to learn how our son saw the world. I immersed myself into this new and foreign reality. We hung close to those on the same path and chose Sam over society and its demands of conforming to social expectations. In other words, we chose Sam.

Choosing to venture into unknown obsessions (i.e. trains, science, planetary systems, Pokémon, and weather to name a few) gave Herb and his son a common bond. This certainly isn’t a popular decision. You realize this when neighbors, family members, and society in general are taking their kids to soccer games, parties, sporting events, and social clubs without even looking your way.

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