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Neurodiversity Awareness/Appreciation

Neurodiversity Awareness/Appreciation

Thursday, September 10, 2015

Not Knowing What I Need

I am not sure if others with Aspergers can relate to this, but one of the hardest things about having "High Functioning Autism" (as well as ADHD and some mental health diagnoses) is that you are sometimes assumed and expected to be more "high functioning" than you are. Or sometimes, in the opposite situation, you are assumed to be much more helpless than you are.

I am not sure how best to explain this, but let me try.

Think about an adult who is considered to be "disabled." (I know many people do not like to think of themselves as disabled and may have different words for it. I am using the word disabled in this blog entry because I'm trying to describe how a person might be seen by society in general.) People with mostly physical challenges might only need special equipment and adaptations in order to be very independent and self-sufficient. A person who uses a wheelchair to get around can probably do almost everything a "nondisabled" peer can do, although they will have to work harder in order to do it! But if they had the right equipment and adaptations (for instance, wheelchair ramps and elevators to get around a building) they are not really DISabled.

However, a person with a cognitive disability might need a lot more help. While their body may be fully functional, they may need help with a wide range things. The most "low functioning" adult might be similar to a small child and need to be helped with bathing, getting dressed, eating, toileting, etc. A more "high functioning": person with a cognitive disability might become very independent and just need a little bit of backup... for instance, a job coach to help them get and keep a job, and life skills training to help them learn how to take care of their own apartment and manage their own money.

Even a person with mental health challenges might need help living independently and may need a lot of the same help that a high functioning cognitively disabled person might need.

A person with no disability, or with only mild disabilities, might be able to live completely independently. For instance, a person with ADHD or a learning disability can usually hold a full time job and run their household with no help. If they do have trouble keeping a job, the help they get would usually be in the form of short-term, solution-based counseling, or more expensive "life coaching."

And then there is me. And I often feel that I need more help than others think I am entitled to.

Have I lost you? Let me try to explain better.

I have Aspergers, ADHD, and depression and anxiety. I am also considered to be smart, mostly based on my ability to write and my ability to work with kids. This is really hard for me to explain, so please stick with me here!

I am good at working with kids. I love kids, I am very sensitive to their needs, and I enjoy the challenge of trying to find ways to meet their needs and help them do their best.

I went to college. I obtained a bachelor's degree, and later a teaching license. By taking a bunch of tests, I was able to get "Highly qualified teacher" status. But an administrator who looks at my college transcripts will see that my grades ranged from A's all the way down to D's. Why? Because, although I didn't start college until I was about 23, and it took me almost 10 years to get through, it was a huge struggle for me. The times I did best was when I was somehow able to work out a way to take only a few classes, while working very part time. I did this by staying with my parents and getting financial aid from the college. The times that I tried to push myself by taking a full load of classes and working part time, or working full time and taking evening classes, were the times that my grades started to slide. My old ADHD problems got in my way... at one point, a professor took me aside and told me that I should probably reconsider being a teacher, because teachers needed to be very organized and focused, whereas I, even on meds, had a mind like a tornado. My mental health problems also took their toll... when I started to get overwhelmed, I would end up skipping classes or skipping work, or both, in order to vegetate at home.

(This, by the way, doesn't help with getting a teaching job. People look at those transcripts and judge you. They really do. Maybe they didn't used to, but when they're trying to weed out candidates from a pool of 1000, they can afford to push aside the people who once got a D in Educational Curriculum and only got a C in Pre-Student-Teaching and switched colleges 4 times and took 10 years to graduate!)



The times that I was at my best were when I was student teaching, and more recently when I was working as a site leader for the day camp for kids with special needs. Because, you see, I am capable of doing these things. BUT it is important to note that, during both of these times, I did nothing else. I had to come home each day and go right to sleep. Keeping my mind focused and organized, and dealing with the anxiety and the social requirements and trying to hold myself together all day absorbed all of my energy, I did nothing else.

My disabilities are like whack-a-mole. I am dealing with the attention and organizational problems, I am dealing with emotional problems, I am dealing with autism problems... and when I've got a handle on most of these things, one gets loose and pops up.

Yet, because I was able, for a few periods of time, to do these jobs, if I am not functioning at my best people think I am being lazy!

I feel like I only have two choices in life. I could completely give in to my disabilities, give up trying, seek help, and get on disability benefits. This would mean I might eventually get to live in my own apartment and have someone helping me to hold things together, but I would probably never get to pursue my dreams of being a teacher and evening opening my own school, being a foster parent, and having lots of animals such as goats and burros and ducks.

And what is my other choice? It is somewhat of a non-choice... to keep on trying to do things that I am not completely capable of doing on my own.

You probably are looking at me funny

Okay, think about this. If I were an adult with Down syndrome, for example... and lets say everything else about me stays the same, I still have ADHD problems, still have autism, still have depression and anxiety, still have social problems, everything else is just as it is... then some sorts of organizations would probably be helping me find a job, and the people at my job would be taught about my disability and what I could do and what I'd need help with, and they'd help me get a place to live and they'd help me manage things and people would think I was awesome for being so independent despite having Down syndrome. But probably nobody would hire a person with Down syndrome to be a teacher. Maybe they'd be a great teacher if given the chance, but they would not get that chance, and that would suck for them if that was their dream. They'd probably be encouraged to get a job in a day care center as an assistant, or something. And a person with Down syndrome has no way of hiding their Down syndrome. But a person with autism is expected to hide it and fake it until they make it. Even if you do disclose that you have autism, you have to show that you can do everything a typical person can do. Because if you don't, you are just like the person with Down syndrome, not being given a chance. But if you do get the chance, you can't get much help.

I mean, even looking into things like recreational opportunities for people with mental health issues... I have to think, "I would love something like that. It would be good for me. But if I had a job, and someone from my work saw me being a client of this organization that serves people with mental health issues... or people with disabilities or people with whatever..."

Does anyone understand what I'm saying? Do I make any sense at all? 

2 comments :

  1. I don't have aspberger's or autism myself, but I do have mental health issues and chronic pain. My son is on the high functioning end of the autism spectrum. He's very intelligent, so people like my mother think he should be doing better in life than he's been able to thus far. It only makes him feel worse about himself that he's never been able to finish college or get a job, or learn to drive. I try to encourage him without putting more pressure on him.
    I'm 50 years old, and even though I work full time, I'm not able to be entirely independent. I still have to ask for help from my mother to pay my bills, and it's extremely humiliating to me. I make well over minimum wage, but everything costs so much!
    I work night shift because I tend to fall into deep depressions trying to work day shifts. My family never understood this about me.
    With the chronic pain, I don't look disabled. I have a slight limp. What people can't see is that I have really bad sciatica, and if I overdo it (walk more than a short distance) it becomes so painful that I can hardly walk. Lately I've had to use one of those scooters when shopping. Because I'm a big person, people think I'm just being lazy.
    I think most people need to learn to not be such judgmental asshats. Not all disabilities are visible.
    I think you're a great person. I enjoy reading what you have to say.

    ReplyDelete
  2. I noticed you'd commented on a blog I follow and checked in to see if you were posting again and YAY!!! So happy! LOVE YOUR BLOG!!!! I will be back - oh, and I RELATE!!!!!
    Love,

    ReplyDelete

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