Living Independently on the Autism Spectrum: by Lynne Soraya

Unknown-1Living Independently on the Autism Spectrum by Lynne Soraya is described as “What you need to know to move into a place of your own, succeed at work, start a relationship, stay safe.”  In fact, it’s a great deal more.  Lynne, who writes for Asperger’s Diary in Psychology Today and works for a Fortune 500 company, covers everything from proper conduct and attire at a job interview, what to do when stopped by the police, setting boundaries, career goals, work related issues and self advocacy.  My copy is filled with highlighted sections and notations, such as this quote regarding boundaries:

“The unfortunate reality for many on the spectrum is that the training that we receive to help us to “blend in” to the wider world can have the difficult side effect of teaching us to ignore our own boundaries.

“We learn to tolerate pain and discomfort of situations beyond what many others experience in order to appear more “normal” or to “fit in.”

In the margin I scribbled – “encourage a sense of self, listen, honor and respect.  Attempts to teach how to “fit in” ensures the opposite within one’s own self. Feelings of being a fraud.”

And this, in her chapter on safety:

“There are times when you will not want to make eye contact.  For example, for men, making eye contact while in the bathroom or at the urinal may be completely misunderstood.”

I wrote in the margin, “Privilege = never having to think about things like this.”  And, I would add, not only never thinking about something like this, but never having the thought occur to me to think about something like this.  Many of the things Lynne writes about are not only things I’ve never had to think about, they are things that have never even occurred to me to think about.

Another sentence I highlighted regarding encounters with law enforcement:

“If you are concerned as to how your body language or speech patterns may be perceived by the officer or first responder, let her know that you have autism and/or provide an autism information card.  Before you reach for the card, however, indicate to the officer either verbally or with gestures that you will be reaching into your pocket or wherever the card is located so that the officer will not think you are reaching for a weapon.”

And this about job interviews:

“However, the way many charities represent autism, mixed with our culture’s very simplistic understanding of what disability is all about, can be devastating to many of us who are seeking deeper inclusion in the world.  The reality is that I, you, and everyone else on the spectrum need to help the world understand that having challenges – even extreme ones – does not mean a person does not have abilities and contributions to make to the world.  Ability isn’t a binary thing.  Unfortunately, many people who have limited experience with disabilities tend to act like it is, so when challenges are emphasized, lack of ability is assumed.”

Throughout this book I thought about my daughter.  I thought about how, as she grows older, she may encounter, at least, some of these issues.  I thought about how she put music to a slide show of photographs on her computer last night and was so excited because I came in to watch it with her and told her how impressed I was.  I thought about how creative she is with language and how she comes up with ideas and ways of saying things that would never occur to me, I thought of her joy in music and how when she dances, she is without inhibitions or self-conscious thought.  I thought about society and how so many would suggest we “train” her to conform, fit in, and how, many believe, it is all for her own good.  And I thought about how I hope my daughter never feels she must betray herself to appease or please others.

Lynne’s thought-provoking and insightful book is available in paperback and on kindle at Amazon.

22 responses to “Living Independently on the Autism Spectrum: by Lynne Soraya

  1. I am reading the book with great joy also right now as i try to read every post of yours Ariane. I must say, you two need to do a project together. Your insightful review of everything and putting it into the simplistic terms for all of us to understand is something I look forward to every day. Thank you.

  2. Many of us have had goals of independence written for us by someone paid to “help” us well into our adult lives. The truth is once we are adults it is very demeaning to us to have others continually decide we must learn to become independent. The fact is all other human beings are interdependent and it is ok for them to hire a person to clean their home, to launder their clothes, to drive them around (taxi), to make their meals (eating out), etc.

    It would be helpful to adult autistics if we too could be considered to be ok human beings when we are interdependent, but too often we are made out to be not ok when others insist on independence as one of our goals. Why isn’t it ok for us to hire a person to clean our home, to launder our clothes, to drive us around or make our meals if we need this assistance?

    The only thing I can think of is that if you are able to do these things for yourself it is alright to choose not to do them and pay someone else to do them for you. If, on the other hand, your body does not permit you to do these things it is semi-ok if your disability is one considered a physical disability and you may be given some accommodations.

    However, if your disability is not purely physical and for sure if the disability is found in the DSM it is assumed you are personally responsible for your struggles and if you had better character or tried harder you could become a more “normal” human being. Because your struggles are perceived to be your own fault (nobody says this aloud, but act like it is the agreed upon truth) then you must struggle and strive to become independent for the rest of your life only because you are labeled “disabled” and it is considered an “appropriate” goal for disabled people to become self sufficient.

    I don’t really understand this sort of set up where disabled adults are held to a higher standard when it comes to independence than the general population, but it is the way the world seems to be set up. To me it would make more sense to teach the skills to enable someone to hire a person to clean their home, to launder their clothes, to drive them around or to make their meals rather than to make them struggle and strive to do something that zaps all their energy and is so difficult for them to do only because they have a disability label that is housed in the DSM.

    • Judy,
      I completely agree with your feelings about the approach to “independent living” you describe. It’s so caustic, because the message behind it really is, “prove to me that you’re competent” which is offensive anyway you slice it. I feel that such an approach is really a perversion of what independent living should really be about. I think the point that’s key is how you talk about others deciding for us that we need to be independent, and what form that independence should take. What independence means to me in an ideal situation, is self agency and the freedom and ability to make our own decisions about what we want from life, and how we work to get our needs met. That may or may not mean “outsourcing” some tasks that others can do more easily or effectively, while we focus on our areas of strength. To me, interdependence is the smartest way to be independent.

      Like you, there are a lot of times in which I feel the weight of the world’s preconceptions about what independence should mean. My husband has to frequently remind me from his non-spectrum point of view, of the facts you laid out so well here— that no one is completely independent, and to claim so is a fallacy. Everyone has their strengths and everyone has their challenges, neurotypicals included. That’s why I cover it specifically in the book, from the standpoint of a person on the spectrum, and I emphasize that is perfectly okay to ask for help or need help. EVERYONE does. As they say, no man (or woman) is an island. Personally, I think what’s important, is understanding our own needs and figuring out ways to get them met, in ways that work for us.

      In the book, I wrote (edited for space here):
      “Another point that I, and many others on the spectrum, have had to learn the hard way is one that is relatively simple: Learn when to ask for help. This can be particularly difficult for you, indeed for many of us. But it’s important to remember that ALL of us, whether on the spectrum or not, have situations where they must reach out to others. It’s nothing to be ashamed of…it’s OK to ask for help. This can be hard for many of us who’ve experienced rejection due to the help we’ve needed in the past.”

      In the original draft I included several examples of how neurotypical people apply the concept of interdependence every day without even paying attention to it. Some had to be cut for length. My favorite of these is the story of how a few years ago we wanted to put ceramic tile in the entryway and kitchen of our house. At the time, my husband had worked with tile before, but it had been a very very long time and it wasn’t something he was an expert at. Our next door neighbor was a tile setter by trade, and did it every day. On the other hand, he had never installed a garage door opener, and had recently purchased one for his house. So they struck a deal and alternated weekends helping one another — one weekend our neighbor came over and tiled our kitchen and entryway, the next my husband went over to their house and helped him to install has garage door opener.

      No one would accuse them of being less than independent for recognizing their strengths and seeking help with tasks that were more challenging for them (due to experience, or aptitude) — in fact it would seem like the smartest way to go. The outcome for us was that we got a professional-quality tile job, for the cost of materials only, at a fraction the time it would have taken my husband to do it alone. Our neighbor got a similar benefit. It was simply common sense.

      Why shouldn’t it be acceptable for us to handle things similarly? \Bottom line — it is. Whether those who presume incompetence choose to see it that way or not.

  3. “The reality is that I, you, and everyone else on the spectrum need to help the world understand that having challenges – even extreme ones – does not mean a person does not have abilities and contributions to make to the world. Ability isn’t a binary thing. Unfortunately, many people who have limited experience with disabilities tend to act like it is, so when challenges are emphasized, lack of ability is assumed.” Love that it’s so true for everybody who is perceived to be “disabled”.

  4. Since the day Emma was diagnosed, by biggest fear has been (and remains): how will she be able to live independently if something happens to Ariane and I. Like death, for example. Thankfully, we have made so many great connections with adult autistics through Ariane’s efforts, that if the “get hit by a bus” scenario should occur, Emma’s tribe will definitely have her back. What a wonderful thing that so many great autistic people have met or know about Emma and would totally be there to help her navigate the terrifying and confusing world of the “normals”.

    Now I just have to keep working on the anti-aging thing.

  5. I think we need to take the stigma out of the equation of people needing help with daily life. We hire employees to do certain tasks in the office, why isn’t it okay to hire someone to assist one in daily chores like Judy Endow states? I grew up with maids, my mom always had two. We still had chores and cooked every weekend. Why is it okay for rich people to have home aids and it is not okay if you are disabled to have someone come and help at home with laundry, cleaning, cooking or anything else? A job is a job is a job. I think there is too much emphasis on the “autistic” or “disabled”, would we even discuss it if the home aides were for those who weren’t autistic or disabled? I don’t think so. We all need to learn life skills and figure out a way to live independently and if it’s not possible to do so, we are free to hire someone to help us. I think we need to have a “how to be a decent human being first so that we don’t sideline people” in schools so we can raise decent human beings from early on. Let’s take the shame out and away from needing and getting help.

  6. Oh, as a non-conformist, non-autistic please don’t encourage her to conform. Please, please. Yuck! When I look around at what apparently so many people think are cool, desirable things and behaviors I am left convinced conforming is completely over-rated! I say beat to your drummer, the world needs more original music!

  7. Echoing sentiments about non-conforming, not having to be totally independent because interdependence is a thing not to be stigmatized, go tribe!, and taking stigma out of getting help. I Am Not Independent, and I Don’t Act Normal, but boy am I happier since I stopped trying sooo hard to be independent and act normal.

  8. Pingback: Living Independently on the Autism Spectrum: by...

  9. Reblogged this on Design for Autistics and commented:
    [Content reblogged]

  10. I’ve got the book on impulse, and quickly realized it is not for me. I guess some people may benefit from it but I find it hard to read. Some of the information seems to be presented as fact, while it is actually author’s personal opinion. The author talks about people on the spectrum behaving in a certain way or experiencing certain feelings, but she presents it as a fact – possibly unintentionally – rather than her personal opinion. I can give an example how facts are presented. There’s another book, which name I’m not going to mention here, it’s not important, written by a psychologist or psychiatrist (don’t remember which exactly) working with people on the spectrum. She talked about people she met or worked with when mentioning spectrum behavior, not people in general. I think generalizing may be misleading sometimes.
    Personal examples were a little bit too long as well (again, for me).
    I also haven’t seen the author mentioning the importance of not just observing patterns in human behavior but understanding it. There’s a big difference between “copying” socialy appropriate behavior and understanding it in depth: seeing people’s motives behind everything they do and feel. I do understand it all depends on intilectual capability of every singe individual, and for some pure “copying” might be ok, but I would still not advise it to anyone. I made this mistake when I was a teenager because I didn’t believe there could be another way, but now I know there is another way.
    Some of the questions that the author wants people to ask themselves, sound very general to me. I would have really hard time figuring things out by answering them, and would probably end up giving some prerehearsed “appropriate” answers not what I actually feel and think.
    I the end I would like to say, that I do believe that the author has had best intentions, she genuinely wants to help people on the spectrum, and there probably lots of people out there who find the book incredibly useful. But I find it difficult to read and use.

  11. Reblogged this on Asperger's Diary and commented:
    Thoughts on my book by Ariane Zurcher.

  12. Pingback: Living Independently on the Autism Spectrum: by Lynne Soraya | Emma's Hope Book - Lynne Soraya

  13. Pingback: Aspergers on the Job: a Book Review | History of Bad Parties

  14. Pingback: Living Independently on the Autism Spectrum: a Book Review | History of Bad Parties

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