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Perspectives of Autism from My Family — 04/25/2010

Perspectives of Autism from My Family

perspective

I have been different from other people for as long as I can remember. Over the years, I have had many different diagnoses, opinions, and treatments that were not quite right. My parents have tried to get me help since I was a little kid, but no one really knew what to do with me.

I was a smart but strange kid. I didn’t understand things, especially people. I didn’t fit in. I thought school was dumb. I thought a lot of things were dumb. Turns out a lot of them are, but many were not as black and white as I thought at the time. It wasn’t until I was an adult that I began seeing shades of grey.

During my early years of school, I barely talked at all and spent a bunch of time in the principal’s office. My teachers and school psychologists thought I could be normal if I tried harder. If I would just be like the other kids, they would like me and wouldn’t be so mean to me. I just wasn’t “applying myself”.

It wasn’t until 5 years ago that I finally learned what is “wrong” with me. I have Asperger’s Syndrome. Autism. I sometimes wonder what would life have been like if we knew that when I was 3 instead of when I was 38? It is hard not to think of all the “if”s.

Would I have been a happy kid? Would I have finished college? Would I have never wanted to kill myself? Would my parents have had a happier and less frustrating life? Would they have had support and not had to figure everything out for themselves? No way to know and generally a bad place to take my brain.

For Autism Awareness Month, I would like to write about autism from the perspective of the people who are closest to me. They have been there for me through the best times and the worst. I think that acknowledging and documenting their experiences is an important part of increasing autism awareness and would like to thank them all very much for answering so honestly and thoughtfully.

I asked 5 questions each to my partner Karen and my parents Gloria and Ron (M&D). Here are their answers:

1. What, if anything, changed for you when you found out I am autistic?

M&D: What changed for us when you were finally diagnosed was relief and sadness. We were glad to hear that they finally put a label on all your symptoms and you did not have a life threatening disease and that this condition was somewhat manageable. We were also very sad and disappointed that this was not diagnosed earlier in your life because of all the pain and suffering you incurred unnecessarily for so many years. As parents, your pain was our pain.

Karen: So many things changed – maybe not immediately but I’d say quite a bit in that first year – more than I could probably put to words here.

A lot of things started to make sense in terms of why you do some of the things you do. I remember looking it up in the DSM (which I use regularly where I work) and feeling like all the puzzle pieces had clicked into place. I never thought of autism because in the DSM it’s listed as a condition that is diagnosed in childhood and I work with adults so it never occurred to me. I don’t think I had heard of Asperger’s at that point.

When I say “some of the things you do,” I mean specifically – rocking, flapping your hands (or “stimming”), echolalia (repeating words or phrases), getting “loud head” – i.e. becoming sensory-overwhelmed, having difficulty with certain social situations or people. Also just some things about what you like or dislike make sense in terms of sensory input – your love of soft things and clothes, your dislike of certain tastes or textures or lighting or sounds.

Another thing that changed is that I had a better context for understanding some of the ways that you see the world. I feel like we went on a journey together as we looked for other people on the autistic spectrum and in particular, resources. Basically it opened a whole new way of understanding who you are and I think that brought us a lot closer.

2. What do you see as the positive aspects, if any, of my being autistic?

M&D: After reading about Aspergers, and being told that most sufferers of this form of Autism are highly intelligent (something that we always knew), and could really focus on one thing at a time,  we were glad that you were putting your talents to good use. We are so proud of what you have been able to accomplish up to now and what you will continue to accomplish in the future.  We are also in awe of your writing ability. Your communication skills over the internet are beautifully written and very enlightening and educational.

It makes us very happy that you chose not to look back with “what if?”.  Being able to look toward the future is a very positive attitude and one that will prove to be very fruitful.

Karen: The biggest thing for me is that you have really changed the way I see the world too. I’ve had to do a lot of my own soul-searching about my learned and ingrained ways of communicating with others, social conventions and norms, the ways that we neurotypical people, or “NTs” take for granted our skill with non-verbal communication. It has made me less afraid of being straightforward and honest because with you, I have to be, and not just because you are my life partner. I can’t expect you to just know when something is wrong or when I might be feeling a certain way – the way other people in my life might be able to tell. I have to tell you and be up front about it. Ultimately it has made me see how much gets covered up – for various reasons – by the neurotypical world – and how important it is to uncover those things.

You are funny and silly and I find, for example, the echolalia endearing. I hope that is not insulting to anyone on the spectrum who is reading this. It makes me laugh but not because I’m making fun of you but because there is a certain whimsical and playful quality to that, and to other things you do that I just love. It’s freeing to me because I get to be playful with you.
I love your love for computers, coding, geekery, gaming, podcasts, screencasts, etc. You get so into it and I think that the computer has brought new worlds to you, including having your own business.

I especially love that we don’t need to constantly talk to be comfortable around each other. I talk all day for a living and I like to be able to come home and we can both be doing our own thing in the same room without having to have constant conversation and both be totally content and relaxed.

I like the way you are and who you are. It’s hard to say what “part” is the autistic part and what part is just who you are because I think it’s inseparable.

3. What kinds of challenges have you faced because of my autism?

M&D: Now you’re asking me to tax my brain.  Thirty-eight years is a long time to remember, but I do recall there were many incidents and challenges.  Keeping you in line at school was probably the most challenging because it involved many years.  Trying to get a diagnosis was very frustrating.  I always had a feeling of guilt that I wasn’t doing enough. Aspergers was an unknown back in the 60’s. No one ever suggested Autism or any form thereof because basically you were functioning (or pretending to function), almost normally. You didn’t have a lot of friends but you managed a few (although some of them were very questionable at the time) you enjoyed their company. You were basically anti-social and that hurt me because I was such a people person. We were disappointed that you never finished college but then again you never thought many of the courses were necessary and what would they do for you later on in life. We tried to convince you to stick it out, but to no avail. I think the college experience was a good one because you managed to make friends and had some fun.

Karen: Probably the biggest challenges are social interaction and travel. You are sometimes uncomfortable in certain social situations, which means that at those times, I go and do things on my own with other people. This works out most of the time – although as you know it took a bunch of years to figure out pretty well what works and what doesn’t for both of us. I imagine there will always be situations that come up that we need to work through. Sometimes there are places or events that I go to and wish that I had my partner there – and that you would be able to enjoy them.  Sometimes it takes a lot of energy to work things out or come to a good compromise.

Travel can be difficult because it’s hard for you to deal with, even though once we get to our destination, it’s usually fine. It’s a lot of stimulation and energy-drain and I sometimes get impatient for you to decide whether we or you are going to go somewhere.

The energy thing can be hard in general because sometimes I have more energy than you to do multiple things or multitask and your run out of it quicker.

4. What types of communication have worked best and what types of communication have worked the least with me?

M&D: Being your mother, I often felt that I had this inner connection to your thoughts and feelings.  There were many times you called me a witch.  When I get the feeling that something is not right I call and I am usually right.  During those times I feel your pain and frustration and wish that I could just hug you and tell you everything will be better.  I think the positive approach always worked for me with you.  I try not to ask too many questions when I think you are having a bad day.  When asked, I try to answer your questions with honesty and an up front answer. I truly believe that since you have been diagnosed, your communication with the outside world has improved.  Knowing what is wrong always helps to prevent bad things from happening because there are medications, explanations and advice as to what to do. I believe that the knowledge of knowing that you are not alone and there are so many other people suffering from the same thing has made you a better person and improved your outlook on life.

Karen: Like I was talking about in my earlier answer, being honest and up front works best. It’s not always easy – it comes way more naturally to me than it did before we got together. It can be scary but ultimately it always brings us to a better understanding of each other. It still makes me squirmy sometimes but it has made a world of difference in all areas of my life, not just in our relationship – which by the way is another positive thing.

Me saying to you, “Why don’t you just….” does not work at all. It makes us both frustrated. Sometimes I forget that if you could “just” do something, you probably would.

5. Is there anything you have learned that you would like to share with other loved ones of autistic people?

M&D: I have learned that everyone walks in their own shoes.  You are who you are, and being happy doesn’t mean that everything in life is perfect.  It just means that you have to learn to live with the imperfections. Remember, all is not what it appears to be.  You have a great support team with Karen, family and friends. To me and Dad you serve as an inspiration in being able to accomplish what you have until now and what you will continue to accomplish in the future.  We love you and we will always be there for you.

Karen: I have learned to be more patient and more honest in general. I have learned that brains are fascinating and mysterious things and that everyone’s brain works differently. I have learned that people on the autistic spectrum have as much to contribute to the world as NTs do. I have learned that people on the spectrum have so many things that they can teach NTs: about different ways of communicating, of seeing the world, of showing love and affection and about the nonsensical nature of many of our social norms. I have learned how much NTs take for granted about how we communicate without words – and how confusing and bewildering this can be for people on the spectrum. I have learned that people with autism are lovable.