Tuesday, September 30, 2014

The Autistic Life (Part 1 of 2)

This is a blog I wanted to write 2 weeks ago, and I'll be honest, I really don't want to type this because this is painful to me in certain areas, but I know this blog isn't just for me. So I ask that you bear with me & stay with this through both parts. My heart has been heavy since this morning & I have had some moments where I have cried. With that said, I have to break this up into two parts because so much needs to be said (and I believe this will touch someone). 

When I first heard the word Autism, it was around 2008 when celebrities such as Jenny McCarthy & Toni Braxton were sounding the alarm (and praise God for that). I initially didn't think anything about it until CNN did a documentary on it. When I was observing the children's behavior (they had to be around 5 years old), I said to a friend of mine (who was sitting with me at a coffee shop as we were studying for the CPA exam), I can't laugh at that because that reflects my behavior on school. I asked my family if I was tested for autism and I received an emphatic NO, and you don't have it. Within my spirit, I knew it was a lie. 

Fast forward to 2011, when I was writing the dedication page to DDBS, I dedicated the book to those who have been diagnosed with AD/HD and/or to those who have any shade of Autism. For the benefit of those who don't know what DDBS stands for, it stands for my novel In my novel Deaf, Dumb, Blind & Stupid: Michael Anderson's Fight For Life. In this story, Michael is a child living with Aspergers. As a result of this disability, he endures bullying at home and at school, he's abused, placed on Ritalin and ends up taking his own life. If you notice as you read this blog, that sums up my life (minus the suicide). I didn't understand why I was making that dedication, but now I do and I'll explain. 

Near the end of 2013, I was looking at my psychological evaluations (when I was in pre-school & kindergarten) and I noticed a common trend: the word "echolalia" appeared and that my social skills & speech was impaired. Eye contact is also minimal. When it all adds up, it's Aspergers (which I suspected that I have back in 2011). It's on the autism spectrum, but it's not severe. I was clinically diagnosed that March of this year and I was relieved. 

I know life is hard for a child living with Autism (and for parents raising children with Autism). I am going to include Aspergers when I speak of Autism for this blog. 

As I continue this blogpost, I will ask fellow author Makasha Dorsey to share her thoughts on this (as she has a son with Aspergers & a short story in The Motherhood Diaries about life as an Aspie Mom). 

Let me give you some facts about Aspergers Syndrome so you're not completely in the dark. This is from their website: www.autismspeaks.org

Asperger syndrome is an autism spectrum disorder (ASD) considered to be on the “high functioning” end of the spectrum. Affected children and adults have difficulty with social interactions and exhibit a restricted range of interests and/or repetitive behaviors. Motor development may be delayed, leading to clumsiness or uncoordinated motor movements. Compared with those affected by other forms of ASD, however, those with Asperger syndrome do not have significant delays or difficulties in language or cognitive development. Some even demonstrate precocious vocabulary – often in a highly specialized field of interest.
The following behaviors are often associated with Aspergers syndrome. However, they are seldom all present in any one individual and vary widely in degree:

• limited or inappropriate social interactions
• "robotic" or repetitive speech
• challenges with nonverbal communication (gestures, facial expression, etc.) coupled with average to above average verbal skills
• tendency to discuss self rather than others
• inability to understand social/emotional issues or nonliteral phrases
• lack of eye contact or reciprocal conversation
• obsession with specific, often unusual, topics
• one-sided conversations
• awkward movements and/or mannerisms

So what was life like for me? I didn't have that many friends, partly due to my lack of social skills. Because I was challenged, I was bullied by certain family members to include physical, sexual & verbal abuse. I was placed on Ritalin and endured bullying in school. 

Because I was a special needs child, I felt as if I was beaten into normal (I was disciplined with the rod for things I knew were wrong, but more for the things I didn't know were wrong). In fact, when you look at someone who is autistic (or even someone who has Down syndrome or even Tourette Syndrome), you'll find a lot of their actions are not planned. They're impulsive. Now, I'm not justifying all of the actions I did as a child and an adult, I say that so that those who don't understand what entails in an autistic life. 

When a child is a "special needs" child, there's a strong chance that bullying will come from the home front and school life. How do I know, it happened to me. And as I became an adult, I have become more sympathetic to people (and for many, they saw it as a means to take advantage of me). But I know many people living this life will relate to this. Another form of bullying that takes place is discrimination. I think I can capture this from a clip from my novel DDBS (this is the scene where Janice comes up to Michael in school): 

Janice comes up to me in full-blown conversation mode: “My man has never gone through anything that you’ve been through. You’ve been neglected, and that’s probably why you get angry at sporadic moments, right?” I said yes. I don’t plan it, and I don’t like it when it happens, because I become very depressed and apologetic. This is partly why I’m in counseling.
But I questioned her, “Is this your main reason for dropping me, because I’m not stable? Does my counseling and my cries for help matter?” Janice doesn’t waste any time making it plain. She says even if her parents OK interracial dating or marriage, I have too many issues. She claims to know a lot of people who have problems and that she loves them “equally,” but she’s still trying to “wrap her mind” around the fact that she loves me the JACKED UP friend with a mental disorder.

Before I go any further, I would like to pause from my life for a moment and ask Makasha to chime in on this:

Makasha, can you share some facts on Autism from A Mother’s Perspective? 
Autism does not mean unintelligent.
• Autism is often diagnosed alongside a mental illness or learning disability—Aspergers Syndrome with Obsessive Compulsive Behavior.
• There are children who are on the autism spectrum and then there are neurotypical children—kids society call normal. Who wants to be normal?
• Some children on the spectrum present no physical problems such as tip toe walking or clumsiness.
• Children on the spectrum need a safe place to be themselves.
Why do doctors give up on patients? 
Fortunately, I’ve never encountered a situation where a doctor has given up on a patient so I wouldn’t be able to answer this question. We’ve lived in 5 states since my son was diagnosed and have had great doctors and support teams each time.
As a parent my advice would be to find the right doctor. Your pediatrician might have worked great for your first two children but not so much with the third. Get the third child a new pediatrician who understands your child’s needs. You can’t get milk from a rock. Instead of blaming the doctor for giving up, be proactive about your child’s health. You are your child’s best advocate.
The same applies for adults. If you are not getting what you need from a doctor, why stay committed in a relationship that does not work for you? Join support groups where you can network with other people who are struggling with the same disability. They are a resource.
Lastly, if you’ve changed doctors for yourself or your child several times because they’ve given up on you do a self evaluation. You are a common denominator. How are you handling your relationships? Are you following the medical advice offered? Are you using the support team recommended? If you don’t follow doctor’s orders then you are culpable as well.
I'm going to continue this blog & my questions with Makasha in Part 2. Click the link below to proceed to Part 2.

1 comment:

  1. Great information. Learning differences don't have to define our lives. I hope that many will be encouraged and that parents would seek out help so their children can be empowered through their difference.