Sammy had his 6 month follow up after his brain surgery! Today he was officially cleared! We are so happy that our boy is back to himself and no longer in pain. His neurologist mentioned that he is a completely different person today than he was before the surgery. I guess his behaviors caused by the pain had become our new "normal" because his misery is obvious to us now.
I am so happy that everything healed correctly. I hope everything continues to work out for him. He has enough going on, Sammy deserves this! To think of how many things have changed in the past 6 months, I cannot believe this is finally behind him. Thank you again to everyone who stuck by us during everything and continues to do so - we could not have done it without any of you. Congratulations Sammy!
Yesterday, I had the opportunity to attend the Honestly Autism conference. There, I was surrounded by parents, siblings, therapists, teachers, social workers, etc. -- all affected by and a part of the Autism community. During the few speeches I attended, I noticed a trend. When a story was being told about an individual with Autism - the crowd would react with the same response, "awwwwww." Even I was guilty of it.
It dawned on me -- I always talk about how we need to treat people with Autism with respect or treat them like there is no "normal." Help them, but don't pity them. Does anyone like to pitied? Felt sorrow for? No. Why do we do it to individuals with Autism? Now, of course, when I'm talking to my friends about something sweet someone else said or I see a couple's new baby, I do use the "aw" response. But do I do it when my friend gets a job interview? When my friend gets asked out on a date? When my mom makes me cookies? No. Those things are unexpected but yet expected of us. I have no problem understanding that my friend got the job interview or that my friend could get a date and end up married or that my mom would be able to use the oven. But, is that what we think for people with Autism?
I will agree that it is heart wrenching when people with Autism do things like this. When they get their first kiss or make you something special. It means everything to me. But it doesn't mean they were never capable. They are human first. All humans want to be loved, want to be successful, want to be there for people they care about. I agree it is a big difference between someone with Autism getting a diploma and when I get my diploma - because their struggle and their push was much more intense than mine. But it doesn't mean they are incapable. It isn't sweet. It isn't beating the odds. It's success. It's what they deserve!
I am thankful for the little moments with my brother that not many can understand. I think we all have connections with the other person in our friendships, families, relationships but ones with Sammy are so important that it brings a whole new meaning to it. Since we don't have the verbal communication, we have to rely on music, facial expressions, body language, laughs, etc. I'm so happy for the times he and I can share a smile with each other.
I want people to be aware of the fact that the majority of people with Autism aren't just socially awkward - there are a lot more cases where individuals cannot talk, need intense interventions, are not independent, will not get a job, will not live outside their parent's house, are not toilet trained, cannot get themselves dressed, will not go to a regular school, etc. If people do not realize this, then we cannot help those who are affected by Autism.
The removal of Asperger’s from the DSM-V has created a lot of controversial arguments among the Autism community. Many believe that this was a mistake and that is taking away a part of an identity that all of the individuals with Asperger’s feel they were a part of. While others believe that this was a very good idea because Autism is a spectrum disorder, and it should be diagnosed as so, not with a specific, separate diagnosis. The people that feel part of the Asperger’s community are very upset by the removal, but the entire Autism community has been greatly affected.
In a recent study done by Donna Kite, about half of the participants voted opposed to the removal of Asperger’s from the DSM-V (Kite, 2013). Although this is just one study, seeing that the opinion was split fifty-fifty just further proves how controversial this issue is. Asperger’s is a pervasive disorder of the Autism spectrum. Those diagnosed with Asperger’s are considered “high functioning” with deficits in social areas and cognitive delay. Those with “low functioning” Autism not only have these characteristics but also have communication difficulties and repetitive behaviors (Ghaziuddin, 2010). Although the two do have characteristics that overlap, the two diagnoses are very different.
Those with Asperger’s do not meet the full criteria of the Autism diagnosis (Ghaziuddin, 2010) Therefore; this was the original reason for the separation of Asperger’s and High Functioning Autism (Planche, 2012). However since the two are so similar, it is unclear when one diagnosis should be used versus the other (Kaland, 2011). This caused the drive for the removal of Asperger’s from the DSM-V. By removing this from the DSM-V, the goal is that it will be easier to provide clear and accurate specifics for each individual case (Kite, 2013).
However, those among the Asperger’s community are very resentful towards the removal. It has in some ways, taken away the voice of those with Asperger’s (Elliman, 2011). In addition, the removal has now caused for a reevaluation of everyone previously diagnosed with Asperger’s (Planche, 2012). This is not only inconvenient but insulting to many people. Those among the Asperger’s community have a strong connection to the identity and believe it is apart of them. These individuals feel their identity is being taken away from them (Kaland, 2011). Removing Asperger’s from the DSM-V is like saying that part of these individuals does not exist.
A spectrum is a scale made up a wide range of characteristics. Autism is a spectrum disorder so each person diagnosed is placed somewhere on the scale based on their development, needs, strengths, and weaknesses. By doing this, one with Asperger’s can still be put on the scale, but can still be classified as “Autistic” without the separate diagnosis of Asperger’s. Since an individual can be placed on the Autism spectrum without the addition of the Asperger’s label, then the removal from the DSM-V is reasonable.
Although I do agree with the removal of Asperger’s from the DSM-V, I do not think it should have been completely removed. I feel very passionately about this topic since I have a brother on the Autism spectrum and have worked with many individuals across the entire spectrum of all ages. My brother would be considered to be on the very low functioning end of the spectrum. Even though the criteria of a spectrum is a wide spread of characteristics from one end to the other, the differences between someone like my brother and someone with Asperger’s, or “high functioning Autism” are extremely different. Although there are some characteristics that overlap, there are some characteristics that overlap between most disorders. When you look at someone like my brother and then someone with Asperger’s, it would seem as if the individuals had two different diagnoses. I do not think that Asperger’s should be a part of the Autism spectrum, but I do believe it should be it’s own disorder all on its own.
I love my brother and admire him for everything he goes through everyday. However, I am very jealous for him of those diagnosed with Asperger’s. My brother, Sammy, is 16 years old and cannot speak. He can address his wants and needs using an iPad program, ProLoQuo2Go, but does not understand the concept of conversation. I have no idea what he thinks about a TV show, his thoughts about people, his favorite color, etc. He has to be taught each item he may request, which takes time. I always wonder what it would be like if I was thirsty and could not get any water. I would be able to request it at least! But Sammy, cannot do this if he does not know the name of such an item, “water.” Sammy also is not toilet-trained so he is still in diapers and often has accidents on our couches or his bed. Therefore, my mom is constantly chasing him around checking his diaper and washing sheets or cushions. In addition to this, he has no concept of safety and treats things like a toddler might; throwing items, spilling things all over the floor, etc. This is just a small glimpse of my brother and his day-to-day life. These are the reasons that I am often jealous of someone with Asperger’s. Those individuals are able to speak, go to school with few interventions, can use the bathroom, can feed themselves, can get themselves dressed, etc. Sammy cannot do any of these things, at least without an intense intervention. This is why I do not think that Asperger’s should not be a part of the Autism spectrum.
In addition to the wide gap between characteristics, I mentioned how those with Asperger’s have an extreme unity and consider it part of their identity. Although I respect this, I do not understand why one side of the spectrum is viewed as “apart of an individual” while the other side is viewed as a “disability” or a “lapse in development.” I do not think that there should be any separation among the individuals on the spectrum based on their needs. If these individuals are all a part of the Autism spectrum, then they should all be viewed as one community; not the “Aspy community” and the “lower functioning.” There is already enough separation among typically developing individuals for the wrong reasons, although this is in no way an intentional harmful separation, there is no need for a separation among the spectrum. One part of the spectrum should not be viewed as better than the other, which is how I often feel.
Many know that the individuals on the Autism spectrum are completely different. One person with Autism is completely different from the next one you may meet. However, the differences between Asperger’s and the other parts of the spectrum are so different, there is no reason for it to be one in the same. Although I agree that Asperger’s should have been removed from the Autism spectrum disorder, I do think it should be considered a completely different disorder instead of just considering those individuals on the “high functioning” side of the spectrum.
I am thankful for my voice, for my speech, for my communication. Having a brother who is non verbal has shown me how important something like this to a human being. We all may not even think of it as a blessing, but there are tons of people, not just ones with Autism, who cannot talk or communicate. I know that even I, take my communication for granted some times. Last week, my brother and mom came to visit me at work where they got to meet a lot of my clients. The two of them were blown away by how great each of them were at introducing themselves and carrying on conversation. And it is amazing! But when you're not in the presence of someone who does not talk every, single day -- you forget how grateful you should be.
I wish people could be more aware of the simple things like this that we all take for granted! Whether you write, draw, paint, talk, give speeches, use a device, etc. -- If you can talk and get your voice heard, you are lucky! Those with Autism, even the ones who can communicate, aren't that fortunate. They are not always able to voice their opinion, wants or needs. Sometimes they need help -- sometimes, it may not even be heard.
I am thankful for all the people who came to my work's auction. The place was overflowing with people. This is so remarkable to see because these are people trying to understand Autism, donate to the cause, and are accepting. I go to work and to my brother's schools and know that there are handful of people who really care about Autism. But to walk into an auction that is swarmed with people from wall to wall is an amazing thing to witness, especially as a sister. In addition, I am thankful for the amazing people who I have been working with for the past few months. Not only are they doing tremendous things for people like my brother, but they have become some of the closest friends I could ever ask for. I know that you should never take your work home with you, but when I live Autism, I want to take my coworkers and clients home with me every night.
I wish people were more aware of the impact Autism has on siblings. There are tons of support groups for parents and not to take away from their pain at all -- but it is rarely talked about for siblings. Not because they don't realize it isn't a big deal, but because the #1 priority is getting the interventions the sibling with Autism needs. Not everyone is like me where we decide that Autism is going to be our life and we are going to work in the field. Some people resent it, some hurt from it more than others, some are less accepting than you can ever imagine, some have terrible relationships with their siblings and parents because of it, some grow from it, some become great advocates. Just like ever person with Autism, every case with the siblings is different too.
I am thankful that Sammy does not have PICA, ruminate his food, or avoids certain foods due to texture. Including myself, everyone has weird foods they don't eat or are on specific diets -- but I am glad Sammy doesn't eat non-food items, refuse to eat, or puke up food. Mainly because it would cause such an inconvenience! I know that sounds horrible, but it's already hard enough for my mom to make sure he doesn't pee on the couch or prepare a typical family dinner while making sure Sammy doesn't stick his hand in a hot pan, could you imagine if she had to make sure she prepared a specific meal for him or had to make sure he wasn't eating hair off the floor?
I wish people were more aware of these types of things that are co-diagnosed with Autism sometimes. Autism isn't just want they portray on TVs or that one individual you met last year, each individual is completely different with unique behaviors, sensory issues, etc.
Today, one of my co workers had their last day. He has been there for over a year and we had a going away party for him. At one point in the party, we asked if any of the clients wanted to say anything. The "thank you's," compliments, and "I will miss you's" were overwhelming and heart wrenching. I guess you can never truly know how much you mean to someone. It gave me goosebumps and I wanted to cry -- not only because it was so sweet, but it made me wonder, what would Sammy say? I know that I am thankful for everyone in his life -- but what amazing things would he have to say? I know he cherishes each and every one of you -- but wouldn't we all kill to just hear what he thinks? His opinion would be my most respected opinion in my life. If only I could have it.
I am thankful for the kiss my brother gives me and the smile he puts on his face when he sees me. I know that it may not have anything to do with me but its his way of showing me that he cares. Its a small connection I can have with him, that I would have with everyone else in my family when I say goodbye or hello after a long time.
I wish more people were aware of how much we really don't know. Not about Autism in general - but what's going on in their heads. I don't know if Sammy likes the heat or the winter better, I don't know what he thinks about an episode of TV, I don't know what his favorite color is. Yes, we can assume or guess based on things he picks out of smiles at -- but its not like he can actually tell us. Oh, if only I could get inside his head for five minutes.
While I was home, I had an amazing time spending the weekend with my family. Sammy and I went to CostCo with our mom and he had me cracking up all day with his selections.
I am thankful for the dumb, silly things that crack me up about Sammy that we can't explain. I have no idea why he shovels his food in like a goat, I have no idea what he is laughing at when he cracks up at the most random times, I have no idea what he is thinking when he sticks his foot in someone's face, I have no idea why he gets so excited over something like a bag of peppers. These are such little and ridiculous things - but they crack me up and make Sammy who he is!
I wish people were more aware of things like tantrums that Sammy and others with Autism often go through. As grateful as we are for the days when Sammy is well behaved and content around our friends and family -- it is a very small number of you who had witnessed a "tantrum." Although there are cases where individuals will have them way more than Sammy does or way more aggressively, Sammy's are just as intense when he has his. For one, it makes the world stop. Nothing else is going to happen until the tantrum is through - it could last an hour, or a whole day. He had one on Saturday and it lasted a little over an hour. He bites, stomps, shovels through food, takes out the most ridiculous items, screams, etc. In some cases, he is needed to be restrained but someone like my mom can no longer do this on her own - sometimes I can do it on my own, but most often not. Although this could happen once a week, its still something that causes Sammy obvious discomfort/unhappiness, along with everyone surrounded by it.
I am thankful for all of the people that are in my brother's life. He has some incredible friends, family, therapists, doctors, teachers, etc. Without any of you, I don't know where Sammy would be. It is because of each of you that he makes progress and is as incredible as he is.
I wish people would be more aware of the fact that people with Autism are each different. Just because you meet someone with Autism, doesn't mean you understand every person with Autism. Every single individual is different, has different needs, and has different strengths. Just like everyone else, just people you met someone without Autism, doesn't mean that person is the same as the next.
Today is World Autism Awareness Day! So, a "Happy WAAD" to all of my clients and my brother -- you guys have changed my life and I am so happy to have had the opportunity to have known each of you. You all have brought something different and unique into my life that I will forever be thankful for.
I am thankful for the patience that I have been given by the every day Autism experience my brother has given to me -- I may lose my shit sometimes and I may not have the best patience of all -- but Sammy has really taught me to take a deep breath and wait for those who need an extra minute to complete something or comprehend what is being said.
I wish the world would be more aware of the patience that is needed for those with special needs! When I am with my brother or clients, we will get comments from strangers about "how patient" we are -- although it is important; everyone should have this skill! Just because people don't understand doesn't mean that they are allowed to be impatient with people with Autism!
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.