I will start by outlining what NOT to do. I think this is best said coming from someone that has lived through a meltdown with neurological implications. The following is an excerpt from a message from Mr. John Scott.
For much of my life, I have had a hard time understanding not only the non-verbal communication of others, but how my own non-verbal communication affected others. Sometimes, if I was irritated at someone, I would simply keep my mouth shut, the rationale being “They can’t hold me accountable for something I didn’t say.”
What I failed to realize was that sometimes silence speaks louder than anything you could say, or that you could say one thing, but your facial expressions, actions, and certainly body language tell the real story.
Before I started this blog I was in a place where I felt alone and had nobody to relate to. Since then I have met so many amazing people and families. I have had the opportunity to talk with and meet many people who were in the same place I once was when this journey began. I love sharing my story and feel honored to have many share theirs with me along the way. Often times I get phone calls from friends or professionals who think that I should meet a certain family. It touches my heart in so many ways, and I am so lucky to have that opportunity.
However, not everyone is in this situation, I know I never used to be. Important interactions with others are not always planned out. Unless we put our phones down, pick our heads up, and share our stories we will never know all the amazing moments and conversations that could have been.
I don’t put a sign on anyone’s neck, nor do I shout form the rooftops what is going on in my house. Okay so maybe with the exception of this blog. Lol! The point is that you never know what someone’s situation of life experience has been, so be sure to walk through life with your eyes wide open.
The other week we were at a kids’ play place and I noticed a dad intensely following around his child. I recognized his behavior in myself, that dad on high guard with his child used to be me. At one point our children were both in the same area so I put down my phone and walked near them, mostly just to make sure that both kids were going to be okay together. While I do get to relax and stay seated more in public spaces now, I know my children, and felt the shift was necessary.
Many times in our lives, we 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 a similar fork in the road. Do I choose my child, or do I choose to please the surrounding neurotypicals, those judgmental people around me?
It sounds simplistic but we realized almost immediately after the diagnosis that you can be judged, alienated, and sometimes even rejected by your peers and perhaps even family.
Although we have addressed the topic of meltdowns previously, it is a topic that needs to be revisited often, given the intense nature of the meltdown. “People with autism, new research suggests, may have an unusually large and overactive amygdala. This may be one reason why people with autism are easily overstimulated and have a hard time understanding and managing emotions.” – University of Washington
This is one of many neurological findings that helps to explain how meltdowns are very different from tantrums. They originate from a neurological place of sensory differences: an over-abundance of neuronal pathways. The brain, whether through too much sensory input, cascading thoughts, chemical overload or some cumulative effect of all of these, gets overwhelmed!
I know individuals with autism can help understand the horror of the meltdown better than any observer. So I would like to refer to Carly Fleischmann for her unique perspective. The following is an excerpt from her website:
Q: Could you go into detail on other types of relationships (friends, co-workers, acquaintances, etc.) that you have had? Do you have a specific example of a misstep? Or situation that you were able to handle because of something you had been taught?
A: Years ago, I was asked to help lead songs for a college-age Bible study (I was 30). Eventually, some of the women in the group went to the leader and told him they were uncomfortable with the way I looked at them. I was asked not to come back. I was in complete shock, and kept trying to figure out where I went wrong.
People on the spectrum struggle to understand the meaning of non-verbal social cues. Unfortunately, this can be very hazardous when it comes to inter-personal relationships, especially those of a romantic nature.
I used to think I had a chance at a relationship with someone as long as they didn’t flat-out reject me. What I failed to understand was the non-verbal cues, i.e. not returning phone calls, not being receptive to conversation. But while these things may not come easy to the Aspie, they can certainly be taught.
Remember in our previous blog on taste differences that smell makes up a large part of our sense of taste. Therefore, an individual with an Autism Spectrum Disorder might have an extremely fine sense of smell, which can be enough to make them avoid certain foods or even lose their appetite. So, there might be overlap in this very complicated topic of sensory differences as they co-exist in each person.
“Our sense of smell is so deeply ingrained in our psychology that many times we don’t even realize how scents are affecting what we do and how we think. Smell, more so than any other sense, is also intimately linked to the parts of the brain that process emotion and associative learning. Meaning that our sense of smell influences our feelings and perceptions neurologically. Our brains are hardwired to perceive certain smells and have an emotional reaction to those smells.”
Continuing our occasional theme of listening to the advice of college students who have “been there and done that,” please join me in listening to recommendations provided by four graduates of Marshall University.
Bradley, Nathan, Stephen, and Brian, each 2013 graduates of the university, responded to questions about personal goals, their experience with support programs, what they liked about campus, etc. But it is the final question I’d like to focus on for this essay.
What advice would you give the freshman “you,” if you could talk with your younger self prior to entering college?
The following is a group of fantastic reader responses and questions related to Ken Kellam’s recent blog titled, “If There Were a Cure for Asperger’s”.
At Aspergers101 we strive to encourage an open conversation among the community. Here is a look at what people have been saying about Ken’s blog, along with a response to one of our readers from Ken.
“I love what you have so perfectly expressed! Our biggest challenges are living among members of a society made up of people who are afraid of differences that they don’t understand, making us another marginalized culture. It’s time to educate!”
“If Aspergers was ‘cured’ I would be deprived of some of the most wonderful, creative and passionate patients and friends that I am blessed to be connected with. My life would be duller, less fulfilled and less inspired by the courage and resilience individuals on the autism spectrum have shown me.
Want to be wowed?
Want to be inspired?
Want to love what you do?
Work to reduce social discrimination against individuals on the spectrum and consider their gifts. Want to explode the myth that individuals on the spectrum cannot empathize, love, be compassionate, parent well, love well, contribute to the quality of our lives? Meet someone on the spectrum! It’s called a spectrum because we’re all on it, no right or wrong, just differences to be celebrated, peace (and who really cares about that).”
“I like your blog and agree with all you say – but how long has it taken you to arrive at your positive feelings about having Asperger’s? I’ve worked with many kids who suffer badly at school, particularly as they become adolescents, and find it really hard to cope with some of the social challenges of trying to be one of a group and relate to their peers. I will try to use what you say to encourage them but I don’t think we should minimize the problems either. The neuro-typical world can be an uncomfortable place.”