As I was looking at my Facebook posts, there was a certain post that got my attention. This made me feel frustrated and angry at the same time. The story was one I’ve read countless times. It’s the story of their young child who was diagnosed very early in their development. The parent is concerned that their kid will never talk to them or do anything else because the child was labelled as lower functioning autism. As I read the testimony, I knew a good, sound, possible answer that might change her child’s condition for the better. I even wrote a blog entry on the very answer that would really would have made a huge difference. So with this…I’ve made a decision – I’m looking to either create YouTube or a Podcast.
One of my biggest frustrations has been that no one seems to be listening. When I got on to Reddit, it was no different. They wanted to bitch about their problems in dealing with autism/asperger’s but, they didn’t want a real answer that maybe life changing. I was even suspended from the damn media page because I was using my book as a device to help people deal with their situation! So I happen to catch a youtube video of Dale Roberts and Julie the book broad talking about the impact of visual/audio communication to a reading audience. So that was when I decided I’m going to do that!!! I’m not sure which one I will pursue yet but, IT WILL HAPPEN and I will let everyone know who reads this blog. https://youtu.be/ncLA1VnYZWo I’ve attached the video if you want to see it.
The companion book to Weirdo is now available on most ebook and print book sites. This has a few of the students I remember during my time at Puzzle City Schools. This is a quick little read but, I wanted to give a shout out to these kids who I was fighting for.
There is a wonderful article in Psychology Today that is written by John Elder Robinson. In his article, he puts a slightly different perspective on labels for our neurological condition. John offers the idea that instead of being labelled with autism or ADHD that we could be a community of Neurodiversity people. I will say that he does point out how diversity is good and bad. To me, I guess it depends on what do you want? To say that I have Asperger’s Syndrome was good because the diagnose finally explained why I was acting the way I was and why I had trouble in all parts of my life. Just for myself, I don’t ‘feel’ alone in my condition. I know I have it and I do my best to live my life being more aware of this diagnose. I like to help other people who are going through the issues I had, but I don’t feel the need to be a part of this ‘Neurodiversity’ community. I just want to be a part of a community with people of all sorts of things they may be dealing with. I realize when or if people find out I have this condition one of a few things tend to happen. 1. They don’t believe I am autistic. 2. They notice my quirkiness and try to stay away from me. 3. They except the difference and try to help if there was something I might have done and let me know about it.
I know to feel accepted, we want to compartmentalize ourselves to give us an identity. I remember back in high school; kids would always try to do this even if we didn’t agree with the label. The jock, nerds, art crew, the goths, losers, bad boys-girls, etc. If you feel like putting yourself into a category, then go right ahead. I guess you have to ask what do want if you place yourself in this position? I realize this is a little cliché, but variety is the spice of life. For me, I try to help folks because growing up with this condition, but never really knowing what was going on, why was I bullied a lot? I believe the article is really compelling and thought provoking. I say you be you. Embrace what God has created in you. I invite you to join the Human Race, it’s an interesting club.
I completely realize that June is the official month of PTSD awareness and PRIDE celebration. I’m glad to see that these two important things in our society are getting their just dues. I’m not here to knock the PRIDE people or the PTSD folks, my beef is with my own cause…Autism. We’re now more than half way through the month and this really feels like a TRUE month long party or ‘active’ educating the public on these causes. So my question is…what the hell happened to Autism Awareness month back in April?!!!!! I’ve noticed each year, this gets less and less attention. The month starts out great with the international day of autism, but after that the flame goes out and the meager smoke snakes its way in the air. It’s not like we have just have a few organizations. Unless there is a renewed story line about the absurdity of immunizations causing autism in children again, we get put back on the shelf until next year.
If we really want to change and create a stronger voice then we need to look at the Pride folks. I have to give them all the credit in the world, they know how to get a message across and hold it all the way through the entire month! They have parades, guest speakers, news stories with educational material, flags, and lots of merchandise. Twitter, Facebook, Instagram and many other social media sites pour out all kinds of Pride and PTSD information and affirmations. The bottom line is we need to do better. I’m not sure if we’re fighting hard enough or many in main stream media tend to ignore us after awhile. Are we afraid to come out of our own closet? Listen, the bullying at work or anywhere else will not stop until people understand our condition. The public needs to be educated on us and our disability. I just feel like our cause has lost a lot of its steam. The only thing that seems to stick out are charitable run/walkathons for autism. That’s great we do this, but it just doesn’t seem enough. Again, I believe we need to steal a page from the Pride group and fly those flags, have all of that memorabilia stuff on, have those parades; get famous people who have our condition to step forward and talk to the people like the Temple Grandin’s, Darryl Hannah’s, Dan Aykroyd’s! We’re getting a bad wrap and our situation is getting worse. Health care, Life Insurance, the Job Market, are just a few examples were we are losing the battle. We need to better plan and execute OUR time of the month!
Has you’ve already read, I’m on the Autism Spectrum Disorder (ASD). On social media sites like Facebook and Twitter, not only am I a part of these sites, but I also join groups that deal with autism and I am friends with people who are either on the spectrum themselves or the parents of children with this disability. Because I have to keep my true identity to myself for legal reasons, I’m having a hard time deciding how to respond to these people who are desperate for answers. There is some information I know that might help and I could give my real life examples as to why I tell them these things, but I don’t want to compromise everything I’m working for with my book. So I will share an actual experience I had to help anyone with a low-functioning autistic child.
So I’ve decided to give some rather helpful advice on my blog without trying to disclose my personal information. One of the main things I read from people are the parents who are dealing with a child that is lower functioning. To any parent who has a low functioning child on the spectrum is if their brain has not fully developed yet; meaning a female tends to fully develop by 21 and a male by 25, then there might be an answer. This is NOT a cure because, as of yet, there is no cure for a neurological brain disorder, but there is a medication that might help. First, I need to let you know that I’m not a doctor or a pharmaceutical rep, I’m a Special Education Teacher and I know as a witness what this medication did for my child. The medication is called Namenda (Brand Name) or memantine. If you look this up, you’re going to find a lot of information with this medication for patients of Alzheimers. The drug is to help people with memory issues which would be your neurotransmitters and the like. When my child was born, doctors told us that you will have to take care of your child for the rest of your life because she is low functioning. However, another doctor was doing a study on the use of Namenda for children that are on the lower end of the spectrum.
Our child was one of those selected back in the 90’s. So we decided to give the medicine a chance and though it took a few years, we started noticing an increase in activity in our child. So much so that her NEW diagnoses changed from a lower functioning to a higher functioning autism. The medication worked. She had started taking the medication at age 6 and kept taking the medication for 7 years. This was finally stopped because our daughter had made such huge strides that she didn’t need the medicine any more. You must have 3 members on your team to make this work – 1. A Child Psychiatrist who understands autism 2. A Child Psychologist who understands autism and 3. A Pediatrician who understands autism. YOU MUST TALK TO THE TEAM OF DOCTORS BEFORE TAKING ON ANY MEDICATION!!! Remember that boys and girls on the spectrum are not the same! The symptoms are not all the same for each gender. We still have our rough days with our daughter, but she has graduated high school and college! Do your homework…check this out for yourself.
I will admit that I enjoy the movie ReadyPlayerOne. I haven’t had the chance to read the book because I’ve been too busy writing, but I would like to read it at some point. Since I am a child of the 80’s, I really did enjoy all of the references back to the 80’s and 90’s. One thing that really stood out in the movie was one of the main characters from the film, James Halliday. I really don’t know if the author Ernest Cline patterned James after this glaring disorder, but I have to give him all the credit. James Halliday, in the movie, clearly was a character who had Asperger’s Syndrome and I say very, very clever! Think about it. James Halliday didn’t care about the riches and fame that he deserved. Most normal humans would not ‘act’ that way. Heck, in one scene he was cleaning up after what seemed to be like a company party. The man is a billionaire and he’s the one cleaning it up! James did a lot of remembering about how life used to be and all the fun. His whole demeanor was very anti-social. Of course we’re not sure, but he might not have been at that company party. The most clear answer on his social angst was his one and only really ‘relationship’ with the opposite sex. James Halliday couldn’t take the ‘leap’ because this was a choice; he couldn’t take the leap because his disability held him back, basically he just could not express his feelings correctly. Many people with autism have a really hard time developing and maintaining a good relationship because of general lack of communication and letting loved ones know how they felt. Things got so bad for Halliday that he eventually lost his only real friend, Ogden Morrow…which was mentioned in the end of the movie. I believe if the friend knew that Og, his best friend, had autism, he might have understood him a little better. James knew that life was ‘terrifying’ for him. So the one thing that James Halliday did understand quite well, which was also mentioned, has much as he felt more free in his made-up world; real live can never be truly substituted with a gaming world. As he said in the movie, “It’s also the only place were you can get a decent meal.” I felt so bad for the James Halliday character because I know, in real life… over all, this does happens to a lot of real good people with autism.
For the week of May 6th to May 10th, 2019; both important but, often forgotten professions celebrate Teacher and Nurse Week. There is some slight irony because I’ve had to deal with quite a few Nurses and Teachers these last couple of weeks. Last week, my wife Gaby had surgery and so I had to interact a lot with Nurses. I find my need for a nurse seems most prevalent is when either my wife or myself find ourselves in a hospital. I’ve experienced amazing nurses and not great nurses. I know one thing about both professions, they both are very difficult jobs and their salaries are terrible for the education they have to achieve. How do I know this? I’m an educator myself with a Master’s degree and my years of experience with the degree I have does not add up to where a ‘typical’ person makes with this combination. A little recognition isn’t too bad. Yes…I’m an aspie teacher. With my disability, this job can be extremely difficult. Standing in front of a class, communicating with lots of students is hard; not impossible. The nice thing about the students is they adapt well to whatever little quark I might have at any given time. When I deal with nurses, they might not understand my odd demeanor but, they’ll pick up on my OCD (obsessive compulsive disorder) in a hurry though! To all the Nurses and Teachers out there…Thank You!
In this blog, my goal is to address any concerns I receive from readers and/or talk about different thing that either directly or indirectly deal with my disorder. I welcome any comments or question you might have. I have finish one book as I’m currently writing this entry but, I’ve already started the early stages of a second book. There is so much literature out in our world about autism but, sadly some people miss the mark. I believe this happens because the people who are writing these things either think they know everything or do but, don’t have the disorder so they only go by observations on a few people. If you ask me what bothers me the most, it’s probably the people who think they have all the answers but, have no background to truly the right to say anything at all. Yes, I do disagree with some people who have the same condition I do but, this is just a matter of a different point of view. So welcome! Enter at your leisure.
This site forms part of So, You’re Autistic (SYA)? at the University of Kent, a support programme teaching those with a diagnosis, awaiting a diagnosis, or self-diagnosed HOW to be autistic – to understand what being autistic means for YOU. We at SYA? are also consultants delivering workshops on autistic experience, neurodiversity, & stigma-reduction