Today I want to talk about something that is very personal. This is a long post without pictures, so stick with me!
Today is World Autism Awareness Day. You will see iconic buildings and landmarks all over the world light up blue today/tonight to raise awareness- the Great Pyramid in Egypt, the Sagrada Familia in Spain, and One World Trade Center in New York City to name a few.
Autism and Autism Spectrum Disorder (ASD) cover a wide range of disorders which all have a spectrum of symptoms. I was diagnosed with Attention Deficit Disorder (ADD) when I was 16, which is on the Autism Spectrum. So many people do not understand the true meaning of this kind of diagnosis or what it entails. I have been told by many different people that ADD is not actually a “thing”, that I have been lumped into the over diagnosed group of kids that where just overly active or that my ADD can be “cured” by diet and behavior modification. Today, I want to talk about my diagnosis, address those comments, clear up a few things about Adult ADD & how it affects my every day life and how I travel with it.
I grew up thinking I was stupid. There is no other way to describe it. I was well behaved in school and I always did my work. I would study for tests but I never did well. My grades were average, always better in subjects I liked (English and History) and worse in subjects I didn’t like (Math). I did really well on state standardized tests, always testing in the top 95% of my age group. I read ahead of my grade level and usually got along better with adults than kids my own age. As I got older, all of this became more prominent. My grades began to suffer in high school and I started to exhibit erratic behavior and poor decision making. I would talk but I couldn’t always form a coherent sentence. I often said what I was thinking, even when it wasn’t appropriate. Around this same time, my older brother was diagnosed with Asperger’s Syndrome, which is also on the Autism Spectrum. My boyfriend at the time pointed out to my mom that I was struggling in school even though I studied and tried hard. My mom began to notice that I wasn’t doing homework, I was lying about things that didn’t matter and I couldn’t motivate myself to do things I wasn’t interested in. My mom spoke with my brother’s psychiatrist about my behavior and the doctor wanted to see me. Within an hour session, she diagnosed me with Attention Deficit Disorder (ADD). At first, I was angry and confused. Everyone I knew that had ADD or ADHD was a “bad” kid or was really weird. I didn’t want to be labeled or lumped into that group. I may have had issues sitting still as a kid but I never had behavioral issues. I am one of the kids that fell through the cracks because I couldn’t be lumped in with the “overly active kids”. It took my a few weeks to accept my diagnosis but when I finally did, I decided I would own it and be open about it.
I started taking medication right after my diagnosis. I started out on a 4 hour medication. I was making better decisions and I stopped lying about stupid things. I was motivated to do my homework for classes I never cared about and I developed a verbal and mental filter. After about a week, we discovered I needed a medication that lasted more than 4 hours. After trying a few different medications, I settled on Adderall XL (extended release) which lasts up to 12 hours. My whole life finally came into focus, literally. The best way to describe it is that a fog was lifted and I could think clearly.
Things to Know About ADD
There are a lot of people out there that think you do not need to medicate someone with ADD. My doctor described it to me as depriving someone with Diabetes of Insulin. People on the Autism Spectrum have brains that are wired differently than “normal” people. The neurons in our brains do not fire the way they are supposed to, meaning it is a biological disorder. Scientists have shown that Autism Spectrum is caused by a combination of genetic and environmental factors. My medication stimulates the neurons on my brain to fire correctly. This is what raises the fog from my life. I can form sentences, make rational decisions and motivate myself to do the things I don’t have a lot of interest in.
I have been told on several occasions that I can “cure” my ADD with diet and behavior modification. It is true that staying on a regimented and healthy diet helps my ADD. It helps my medication work better and it also helps me on days when I don’t take my medication. I saw a psychiatrist for five years after my diagnosis. We worked on how I could work with my ADD to be more successful. Being on the Autism Spectrum, there are a myriad of other things I have to deal with. I have some anxiety that can build up over time if I am not careful. I have a short temper and can lash out. I can get overwhelmed in large groups of people with lots of noise. I spent those five years with my doctor working on how to manage my behavior in these situations both with and without my medication. While I do know how to manage my ADD when I am unmedicated, there is nothing that can replace my medication. There isn’t a food in the world or a behavior modification that can make my neurons fire correctly, only my medication can do that.
Traveling with Adult ADD
It would seem that I could just take my medication with me wherever I travel and I would be totally fine. Sadly, there is so much more to it. Even though I have been traveling around the world since I was 5, I still get anxiety when I am packing. This is a big reason why I don’t procrastinate packing for a trip. I have learned that the longer I wait to pack, the more anxious I get. I make sure that I only take enough medication for when I am gone, I never take all of my medication with me. All of the medications used to treat Autism Spectrum Disorders are controlled substances. This means that I can only get 30 days of medication at a time and I have to wait 30 days between refilling each prescription. This can get complicated when I am leaving on a trip around the same time I need more medication. There are so many people that abuse these medications that they have made it more difficult for those of us that really need the medications, and use them correctly, to get them. As you can tell, it is frustrating…
When I travel, I need to make sure that I get enough sleep and I stay healthy so that my medication works at it’s best. Sometimes I have to sleep through a flight instead of working or bring lots of cold medicine with me to avoid getting sick. This can cause extra work later in my trip or even before but it is always worth it.
What You Can Do
There are so many people that are on the Autism Spectrum. Many of them go undiagnosed for years, sometimes they are never diagnosed. There are people in my life that fall on every part of the Spectrum. Each and every one of them is amazing in their own way. If you know someone that is on the Autism Spectrum, be understanding and loving. Accept them for who they are and be the support system they need. A few things you shouldn’t do are telling them their diagnosis is invalid, that their diagnosis doesn’t actually exist or pressuring them into hiding their diagnosis.
My parents have been incredibly supportive about my ADD. They are always understanding and work with me on continuing to manage my ADD. One thing they never did though, was let me use my ADD as an excuse or a crutch. My parents always expect more of me and set a bar of high, but achievable, expectations. This was the best thing they could do for me, other than encourage me to be open about my ADD. They have never pressured me to keep my diagnosis to myself or deny my diagnosis. In being open about my ADD, I have met and worked with so many people that have experienced struggles similar to mine. I have learned more from others and been able to share my experiences with others who are struggling.
Today, I want you to be a little more understanding, a little more patient. Take a few minutes to think about how you would want to be treated if you were someone with ASD. Express thanks to parents and family members of people with ASD, they are some of the strongest people I know. Be more understanding of the embarrassed and flustered mom who is dealing with an older child throwing a tantrum in public. The biggest thing I have learned from my ADD Diagnosis is that you never know what is going on in someone else’s life, so never assume anything.
You can find more information about Autism and Autism Spectrum Disorders by visiting the Autism Speaks website. Be sure to wear blue today and support Autism Awareness all over the world!
Feel free to ask any questions, I will do my best to answer them! However, I will delete negative or derogatory comments.