Like many times in life, you come upon a fork in the road. One choice leads you down a certain path and the other choice leads you down a very different road. Finding out your child has autism is complex enough, but eventually we all come to the same fork in the road. Do I choose my child or do I choose to please the surrounding neurotypicals, those judgmental people around me?
This sounds simplistic, but parents realize almost immediately after the diagnosis that you are judged, alienated, and sometimes even rejected by your peers and perhaps even family. It hurts because you know your child cannot help the ‘tantrums’ when the baby in the grocery store won’t stop screaming. Or that your child’s complete lack of athletic skills will never match the soccer mom’s expectation of a friendly neighborhood soccer game. So eventually you and your child are excluded.
When these and many, many other similar situations would arise I realized my son would elicit these judgmental looks from people as a certainty because the autism was not going to be going away. So, we chose our child over others’ perceptions of what we should be.
As soon as our family as a unit took that path everything became easier! I no longer worried about others’ lack of knowledge when it comes to sensory issues or brain function. We as a family would have our own fun. Quirky doesn’t bother me anymore, in fact it’s almost cool and definitely a relief.
Together our family is a strong unit accepting and excelling in my son’s unique interests. Our family weekends are no longer with people that make for awkward or unforgiving situations, but we welcome anyone who would like to be with us just as we are! Now, many years later, the same families who alienated us for the differences, have surprisingly praised our strong family unit, ’hiccups’ and all!
By Jennifer Allen
This summer Aspergers101 hosted a free informational series on Aspergers at the San Antonio Public Library. We have recorded each of these valuable sessions in video and powerpoint format so that you can have access to them at any time. Below, watch the first workshop from our Informational Summer Series on Aspergers focusing on diagnosis in childhood. First, Jennifer and Sam Allen discuss the initial steps of recognizing signs of Autism in a child and seeking a diagnosis. Next, Berenice de la Cruz, Ph.D., BCBA-D and COO of Autism Community Network, gives details on the diagnosis process and the medical terminology behind Autism and Aspergers.
The following checklist for Autism and Asperger behavioral signs comes from Jennifer and Sam’s powerpoint. This checklist is not meant to be used as a professional or standalone diagnosis, but rather as a helpful guide that can support you in your journey of diagnosis for your child.
Going through the Kinder through third grade for my Aspergers son was by far our (and his) most difficult time. A perfect storm comes together for the parent, the teacher and especially the undiagnosed child on the higher end of the autism spectrum when beginning the school age years.
Often thrust into a social situation where no one has a clue that autism even exists can easily mask itself as bad behavior. This crucial window of time has been my inspiration to create Aspergers101 so that you can have more information at your fingertips than we did! The signs could come earlier if your child is in day-care or daily with other children. Although our son (who was our first) did show early signs…it didn’t become ‘in our face’ until he started public school.
People with Asperger’s usually collect labels like ADHD, anxiety disorders, or bipolar disorder before they’re diagnosed with AS. The label that annoys me is Oppositional Defiant Disorder. Is there a difference between people whose Asperger’s-related behavior is misunderstood and ODD? I find that ODD is sometimes simply a description of behavior without a cause.
Insurers ask for diagnoses based on ICD 10, the “handbook” of diagnoses. One of the official ICD 10 descriptions of AS is that it’s a “neuropsychiatric disorder whose major manifestations is an inability to interact socially; other features include poor verbal and motor skills, single mindedness, and social withdrawal.”
ICD 10 describes ODD as a behavior disorder and a psychopathological disorder. It’s described as a “recurrent pattern of negativistic, defiant, disobedient, and hostile behavior toward authority figures.” The criteria include “frequent occurrence of at least four of the following behaviors: losing temper, arguing with adults, actively defying or refusing to comply with requests or rules of adults, deliberately annoying others, blaming others for own mistakes, and being easily annoyed, angry or resentful.”
ICD 10 is right in my experience in describing those with Asperger’s Syndrome as “single minded.” This is a real strength when doing tasks, following rules and being honest. However, single mindedness can also include inflexibility or even severe rigidity in sticking to a point of view.
Autism is real and like many others with the diagnosis, my son, Alex Hale, is succeeding in life on the Spectrum. His two songs “Into the Light” and “Walk a Mile” share his thoughts and emotions on the journey of an Autistic Individual, and assert that there is light at the end of the tunnel. It has been a long journey since his official diagnosis at the age of 6 years old.
There were signs of awkward behaviors, however his pediatrician initially suggested that we didn’t look for “trouble”. Once diagnosed we were in a state of awe rather than shock. We had assumed he would be diagnosed with ADHD or something of that nature. Immediately Alex’s dad and I started asking questions, reading up on Autism/Aspergers and looking for answers and methods to keep Alex mainstream.
Alex is high – functioning and as he says in his advocacy speaking engagements, you may not guess by looking at him, or meeting him initially, but spend a little bit of time with him and you will see that his social skills are a little different.
So you’ve just found out that your child has Asperger’s Syndrome/High-Functioning Autism. What’s the next step? As an 18-year-old with Asperger’s Syndrome, I can provide some insight:
People with Asperger’s seem to lean towards wanting space from others, and in some cases, family members as well.
If an Aspie is feeling unnerved by loud noises in the house, give them space and let their room be their sanctuary; it’s their quiet zone.
It has calmed me down in the past, so it should work for other Aspies as well. I’m mindful not to keep music and TV in other rooms too loud.
For individuals on the autism spectrum, a diagnosis from a medical professional is necessary in order to qualify for medical services. One main difference in the assessment is in how the child is evaluated and whether the evaluation is done by an individual or a team.
At ACN, we conduct interdisciplinary autism assessments where a number of specialists participate in the evaluation and all of them are present at the same time from start to end.
The team consists of a developmental pediatrician or psychologist, a behavior analyst, a speech-language pathologist, and an occupational therapist. We believe that a comprehensive evaluation gives parents a clearer sense of the skills and deficits in their child and a clearer direction for seeking therapies.
The following is an illustration of the pathway to a diagnosis at ACN:
It’s not easy to hear that your child is going to struggle in certain ways. The fear of the future can be downright paralyzing and while all children are perfect in their own way, it’s not what you dream up when you first think about having a child.
Nobody fanaticizes about therapists and sensory breaks. Instead you think about nursery bedding and buying cute tiny little shoes that your baby will truly never leave on. Having gone through a diagnosis process twice with my amazing and extraordinary loves, this is my best advice: “Denial Never Wins!”
Okay so let me explain, but first I need do a little storytelling. Stay with me, because I promise that this is going somewhere. The other day I was in the kitchen, all in my mom zone doing mom things, when my little cutie ran over to get me to do what he was doing. Not only did he run over, but he also invited me to join!
An undiagnosed childhood, or the “unnamed beast”…
That’s how I thought of it at first. That is, when I first realized it had been there all along, without my having realized what it was to begin with. I’m talking about Autism. Yes, you can define it through technical or psychological means. But I’ll tell you what it means from the perspective of someone who was born with it.
It means you see, think, look and feel differently from what most people expect of you, and, unfortunately, for many, it means feeling a little awkward at best, oftentimes left out on the average, or being utterly ignored at worst. But when I was a child, like many adults who are now being diagnosed with Asperger’s Syndrome, literally no one had any idea what was really happening in my brain. Misunderstandings, misdiagnoses and misfortunes tend to follow any dealings with the unknown.