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Beyond The Puzzle Piece

Life Growing Up With Autism: First Hand

Anne DeFranco sits down with her son Chris, diagnosed with Asperger Syndrome at age 4, and discusses the realities of growing up with Autism.



In this edition of Beyond the Puzzle Piece, I introduce you to Christopher Jones. Christopher is an 18 year old math enthusiast, with an interest in history and politics as well. Chris also has a unique experience and voice when it comes to growing up with Autism. Following an initial diagnosis with Asperger Syndrome at the age of 4, Chris has received Special Education services since that time.

Chris was part of the first wave of students with what is called “High Functioning Autism” to go through the educational system while receiving services specifically for his needs. Chris has received Physical and Occupational Therapy to help cope with sensory issues, as well as Speech and Language Therapy and Social Skills groups to assist in communication skills. He started in a self contained Autism Support Classroom with a dedicated Special Education Teacher, and was gradually included further into the general education classroom.

Now 18, Chris is a High School Senior with very strong opinions about everything from music to politics, and certainly autism. Join my conversation with Christopher as he shares with TGNR the thoughts, experiences, informed views, and reflections of his life growing up with autism.

TGNR Anne DeFranco: I am sitting here with Christopher Jones, Senior at Hempfield High School in Landisville, Pennsylvania. Christopher, can you tell us what you are planning to do after you graduate?

Christopher Jones: Move into college and try to pursue the maths.

TGNR AD: Do you know what kind of math you would like to pursue?

CJ: Not at all.

TGNR AD: What started your interest in math?

CJ: To be honest, it is just how my brain works.

TGNR AD: So you have a “math-minded” brain so to speak?

CJ: You could say that.

TGNR AD: Where do you plan on going to school?

CJ: I am planning on going to H.A.C.C. (Harrisburg Area Community College) and then transferring to Millersville (University).

TGNR AD: Are you going to get a graduate degree?

CJ: I am not sure.

TGNR AD: Let’s talk about school for a little bit. What do you think about school now?

CJ: School should basically be a place where you learn and a place that should prepare you for your career. Not as much as college or a technical school would, but the very basics of your career.

TGNR AD: Do you feel like schools are accomplishing that?

CJ: They could do it better.

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TGNR AD: How do you think school could do it better?

CJ: Well, to be honest……In my honest opinion there are some things that school requires you to take that have no direct link to you career path.

TGNR AD: Can you give me an example?

CJ: Some schools may have you take an Art, most schools make you take Gym and basically most schools have some topics that just seem off topic.

TGNR AD: Do you think that those classes may be beneficial for some people?

CJ: It could be beneficial for some, and I don’t think they should phase all of those out, but they should just realize that not everyone needs them.

TGNR AD: So, tell me more about school in general. Do you think schools are well set up for people with Autism Spectrum Disorders?

CJ: To be honest, not really. They are probably better than the were in the 80’s, but they are still not the best.

TGNR AD: What do you think schools could do differently for people on the Spectrum?

CJ: Well, what’s possible for them to do is to stop trying to avoid giving people programs that they need. Some districts are not the most honest about giving autistic students what they need.

TGNR AD: Is that something that you have experienced personally? I know you have attended school in two different school districts.

CJ: Yes.

TGNR AD: Do you feel like one gave you more than the other?

CJ: I feel like Hempfield has given me more than Bristol Township School District because at least they don’t try to avoid my IEP (Individualized Education Program).

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TGNR AD: For those who don’t know, an IEP is an Individualized Education Program. Chris, can you explain what an IEP is?

CJ: An IEP is basically a legalized document that states what a school has to do to try to help someone with autism.

TGNR AD: Is it just for people with autism?

CJ: It can be for other things but I don’t have experience with other things. So I can’t tell you anything about other things.

TGNR AD: What do you think was avoided for you with your IEP’s?

CJ: I honestly think they tried anything they thought they could get away with.

TGNR AD: Do you think they were doing it on purpose, or do you think they were just ignorant of what they were supposed to do?

CJ: Probably both.

TGNR AD: So you have had a good experience and a bad experience. What do you think can be done? What do you think schools can do to make IEP’s and programs better for kids with autism?

CJ: I think they would probably need to do better evaluations and listen more to the Special Ed Teachers.

TGNR AD: So, you think the special Ed teachers do a good job, but it gets lost once it gets to the administration?

CJ: I haven’t really seen any Special Ed Teacher that hasn’t really done a good job. Unless they have been covering it up. But every problem I have encountered has to do with the higher-up’s.

TGNR AD: Can you tell me, what is different about your school day because of your IEP than most kids who are in your grade?

CJ: To be fair, there is not as much this school year. Because as you help a child with an IEP, if you do it properly there is a chance that they will need less and less services. So I am at the point where I need much less services than others.

TGNR AD: So, going back a few years, can you tell me some things that would be different than a typical high school student?

CJ: Well I had extended time (on tests and some projects) because it takes me a lot longer to process the information that is inside me head.

TGNR AD: What about your Homeroom? How is your homeroom different?

CJ: Well for one, there are much less students in it.

TGNR AD: Is your homeroom teacher your special ed teacher?

CJ: Yes.

TGNR AD: Is it better for you to start off your day in a smaller group with a quieter setting?

CJ: I think it is easier.

TGNR AD: What are some of the things your special ed teacher does to help you out?

CJ: Well for one, she reminds me of things my teachers need me to do if I forget. She also makes sure that more long term projects are reminded to me.

TGNR AD: What about when you take tests? Do you go with her, or do you stay in your classroom?

CJ: When I need extended time, I go with her.

TGNR AD: Can you give me an example of a time when you might need your special ed teacher? Not something that happens every day, but something that happens sometimes that she might help you out with.

CJ: I can’t remember enough details for a specific situation. But sometimes I get overwhelmed with emotions and often time she helps un-overwhelm me.

TGNR AD: So if you are in a situation in class and you are overwhelmed, you can ask to go see her?

CJ: Well, usually at that point the teacher just calls her.

TGNR AD: So they know that is a strategy for you if you get overwhelmed?

CJ: Yes.

TGNR AD: What is it like for you in the classroom?

CJ: Well, it depends on the subject. But most of the time I am fine.

TGNR AD: What if you are asked to do group assignments?

CJ: Group assignments are a little complicated. It basically really depends on the type of group assignment. Because if it is just solving problems and occasionally bouncing ideas off of each other that is fine. But when it becomes each person does something and you have to write something together, that is when problems start to come in.

TGNR AD: So you don’t generally like working with other people?

CJ: I try to avoid working with other people if I can.

TGNR AD: Let’s talk more about Autism in general. What differences to you notice between yourself and what some would call “neurotypical” people?

CJ: To be honest, I think it is about what a brain prioritizes and the pathways of the brain. You see, most people can socialize very well. While I can’t speak for all autistic people, socialization is not as natural for us. And when it is natural for us, it does not always seem to everyone like it is socialization.

TGNR AD: Can you give me an example?

CJ: I cannot really think of one off the top of my head. I just know that there are times when I think I am being social and I am told it is not correct socialization.

TGNR AD: Some people would say that is a disadvantage. But I want to know, what do you think is an advantage of having autism?

CJ: It seems to me that I can understand certain logic or algorithms better than most people. I also have a very different perspective in solving problems.

TGNR AD: Do you mean mathematical problems, or problems in general?

CJ: Any Problems. Because if you have many people who can all solve a problem , but they do it the same way, and you put those people together to build a rocket you will get an adequate rocket. But you add a person in who thinks completely differently, that person will have more impact then one of the people that thinks the same. If you remove that  one person who thinks differently, it will change things a lot more then if you removed one of those people that thinks the same.

TGNR AD: That makes a lot of sense. So, what do you think is an advantage for you?

CJ: I am not sure exactly yet, but I know that sometime I can see things in equations that other people don’t notice. Things that just seem like common sense to me. But at the same time, there are things that most people see in those same equations that are just common sense to them that seem completely abstract to me.

TGNR AD: There is something else I wanted to talk to you about. There are several different groups that support autism in different ways. Some of them people with autism like and some of them people with autism have problems with. Can you tell me a group that you have issues with and one that you think does good things for the Autism Community?

CJ: Well, the one that I don’t support, and many people with autism feel this way, is Autism Speaks. But the one that I do support is Autistic Self Advocacy Network.

TGNR AD: Can you tell me what your main issue with Autism Speaks?

CJ: To be fair, most of what Autism Speaks is trying to do is not help people with autism but mainly to cure autism. Which to me, doesn’t make sense. Autism is not like cancer. So how can you cure what is really a different way of brain functioning or thinking?

TGNR AD: I know you know other people who are on different parts of the Autism Spectrum very well, people you care about. Some who speak very little or are completely non-verbal. What do you think about when people use those examples as reasons to “cure” autism?

CJ: What you really want to do in these cases is get past the communication barrier. And communication does not have to be speech. Many of them have special devices that allow them to communicate through typing or symbols. Not everyone can do that I imagine, maybe that don’t have the access to it everywhere, but quite a few can. But lack of speech does not mean lack of intelligence. Or that they are broken and need to be fixed.

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TGNR AD: Why do you like the Autism Self Advocacy Network?

CJ: It is run but mainly autistic people. Mainly it is autistic people standing up for autistic people. We can understand our problems and our needs. And I don’t mean to be offensive to parents, but some parents who have children with autism don’t understand. They think it is something like tuberculosis. Autism is not a disease. It is just a different thought process or way the brain works.

TGNR AD: I understand why a group like that would make an impact for people with autism. Do you have any people you admire who are on The Spectrum?

CJ: I am going to be honest. Most of the people I look up to who have autism we don’t know 100% for sure that they have autism. Mainly the great scientists like Einstein, Newton and Edison. People looking back think it is possible they had autism. I would even suggest that Tesla may have had autism. But we don’t know this for sure.

TGNR AD: Before we close, can you tell us one thing you want everyone to know about autism. Some people who are reading this may know a little bit about autism, some may know quite a bit. Some may just be finding out that they have a child with autism or have autism themselves. What is something that you think is important for people to know about autism from someone with autism?

CJ: Well, basically, people with autism often need help but it is mainly in the areas of coping with stressful situations, emotions and communication. There is a balance between helping people with autism cope and trying to destroy autism. In my mind if you destroy autism, you might as well murder someone’s personality.

TGNR AD: Well, thank you Chris, that gives up a lot to think about. Thank you for sharing your story with our readers.

CJ: You’re welcome.

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Anne DeFranco is a veteran special education professional, and is the mother of two sons with autism. Anne has published extensively on the subject of autism for TGNR. Anne DeFranco joined TGNR in 2016, serving as a Senior Contributor-at-Large.