Replies to This Discussion

Permalink Reply by Joanna on February 9, 2012 at 5:35pm

For me I am not looking for services, I want to understand why I am the way I am. For me that is huge. I guess we all have reasons for getting a diagnosis, or searching one out anyway. As for the rest of your post I guess it's all up to how helpful your family wants to be. But for em it is a relief to understand why. I would think people who love you accept you for who you are, or they should anyway. You can't control anyone eses or how they will react or not react you can only get help for yourself i y==f you want it.

Permalink Reply by Daisy on February 14, 2012 at 1:31am

I don't know if I'll bother with an official diagnosis -- at age 64!  I don't think a diagnosis would make much of a difference for me. However, when I think about getting diagnosed, it is primarily for political reasons -- to help advance understanding of AS and to provide encouragement and a model for others with AS. I've put my life together pretty well in spite of AS. "Coming out of the closet" would be a way of educating others about it.   If I want to help others with AS, it is easier to do that if I can say that I also have it.  I don't think I'd be asking people to change to accommodate my diagnosis.  But I also don't want to "fit in."  I want to find a way to be who I am and to be proud of that.  If I can be proud to say, "I am a person with A.S. -- let me tell you more about my diagnosis" then I will have helped advanced the cause for all of us.

Permalink Reply by Shane on February 20, 2012 at 6:58pm

I benefited from the relief of acknowledgement of the program and looking for a way to change.  There are so many different things that were said were wrong with me and treated from all the wrong angles.  Now I have something that makes sense and I have reasons why other treatments may not have worked and methods I can use now.  I am using my diagnosis to help me, and trying carefully not to use it as a crutch to not work on myself.

I think we should embrace who we are, but socially we should compensate to fit in rather than expecting others to compensate for our diagnosis.  I feel like expecting others to change themselves for me is almost like playing the "victim" card.  I'd rather show them I can work on my shortcomings and overcome them to the best of my ability.  This of course only applies if I find something to be considered a shortcoming.  I won't change something I like about myself to fit in.

Permalink Reply by Christine on April 9, 2012 at 9:39pm

The benefit for me as a person approaching fifty who always knew something was up with me it would be and has been as if a light bulb went on and it has answered so many questions as to why I do so many thing that I have done my whole life. My son was diagnosed two years ago I didn't know what autism was until that time. And to see myself with many of the same traits was a shock. We thought we were normal in our own quirky way. We are a family of artists so we Lways had that excuse as to why we were the way we were. We embraced our differences. The only time we have issues is when we interact I. The world at work etc. I have had many obstacles and it helps to know why I have had these issues and I can give myself a break now and not feel mental or stupid. So that is why it is important to get a diagnosis. For your self. It has given me a new point of reference. I see how successful I have been. I overcame a lot learned to. Compensate and hide so many things I feel so mush better with this knowledge.

Permalink Reply by AnnB on April 9, 2012 at 9:52pm

Thanks Christina

Permalink Reply by Paula A Falocco on April 12, 2012 at 10:56pm

I was diagnosed last year with Aspergers last year and 'sensory defensiveness' a couple of months ago (i'm really close to 50!), I have struggled with mood and sleep problems for years, and now i'm learning that a lot of these problems are related to the new diagnosis. At first I felt kind of stupid getting 'labeled' with new problems, but my psychologist correctly pointed out that i've been living/dealing with these issues my whole life - but just now learned that there are official names for these things. it has helped me to read about others who deal with similar issues, because i have felt like a misfit most of my adult life.

The sensory issues (all senses except sight affected) have made some aspects of my life quite a challenge (like working in a 'cube farm' ), but now I am working with an occupational therapist (who typically works with kids) and it is helping a lot. My healthcare providers are communicating with each other and helping me a lot. Just this week I saw a real benefit from this treatment by being able to calmly and professionally address an issue at work that would have been pretty much impossible just last year. 

I'm not asking anyone in the world to make life easier for me since i have these new labels, but i'm trying to learn how i can deal with the world better. and maybe even more importantly realize which quirks (i think of them as 'features', since i'm a software engineer)  are 'OK' and not worth getting stressed out about! everyone has some 'features' that are what keep the world from getting too boring!

Permalink Reply by Christine on April 15, 2012 at 5:10pm

Paula, what is sensory defensiveness ?
I so agree with you about our features being positives. There are a few that aren't so positive but knowing there is a reason has made such a difference I my life even this late in the game. I find I am looking back in my life and seeing many experiences that I had in a different light. Wish I had known sooner.

Permalink Reply by Paula A Falocco on April 15, 2012 at 7:33pm

Here's a definition from http://en.wikipedia.org/wiki/Sensory_defensiveness

Sensory defensiveness is a condition defined as having "a tendency to react negatively or with alarm to sensory input which is generally considered harmless or non-irritating" to neurotypical persons.^[1]

It is not uncommon for individuals to have a few mild sensory defensive traits. However, when multiple defensive traits impact the person's day-to-day life, that person is considered to be sensory defensive.

I also wish I had learned about this stuff a long time ago !

The book 'too loud too bright too fast too tight What to do if you are sensory defensive in an overstimulating world' by Sharon Heller is interesting and informative

Permalink Reply by Christine on April 15, 2012 at 7:54pm

Wow! Both my sons and I are like this with many things my officially diagnosed son has sensitivity to light the sun heat. My other undiagnosed son had food issues. Clothing issues. I cannot deal with the heat at all. I avoid crowds by shopping at off times and at night. I have always been affected by the atmosphere of a place or a store.

Permalink Reply by Paula A Falocco on April 15, 2012 at 8:09pm

you may want to read the book i mentioned ... but get ready .. i felt a bit insulted by some of the author's comments!

this website has some good information www.sinetwork.org/

it's all pretty overwhelming to me. The OT that I see has order the iLs Focus Series from Integrated Listening Systems for me to use. It is a therapeutic listening system that is supposed to help 'regulate' the autonomic nervous system in people with sensory issues.

Not sure if we'll start with this program this week or next week. 

www.integratedlistening.com/how-ils-influences-sensory-processing/

Permalink Reply by Jared Lee Davis on April 20, 2012 at 2:29pm

I am a 32 year old Mechanical Engineer, served full-time for my Church as a Missionary teaching over seas in a foreign language and served in the Army Infantry for several years, among other things to give you an idea where I have been.  My father is an LCSW (for 25 years now) and so he diagnoses psychological disorders and such.  He knew ever since he went through school that I was on the Autism spectrum, but he didn't tell me.  In many ways I think my life would have gone a lot smoother if he would have let me know earlier that he thought I was on the spectrum.  (Bear with me and I will get around to my point.)

As it was, I learned that I had the disorder only 3 or 4 weeks ago (from my father) and since then have been reading everything I can on Autism Spectrum Disorders.  In my case I can tell you that it would have made my life a lot easier if I would have learned it earlier on in my life.  My father didn't want to tell me, because he didn't want it to hold me back.  But I think that the best thing he did to allow me to excel was to tell me that I am smart constantly, and explain to me that others sometimes don't get it (I had been told all my life that I was lazy, stupid, weird, stuck-up, lacking of common sense, lacking in attention to detail, etc).

My lack of success in social interaction caused me a lot of angst up to this point, but now (that I have a label that I can study) I realize that I am not just an alien as far as my social interactions and the maverick way that I look at life and the environment around me, but rather that I just have a mind that see's things very differently from everyone else.  And also, that the way I see things is an advantage.  I can think OUTSIDE of the BOX.  I design things from the bottom up visually (piece by piece) rather then from the top down (seeing the whole apparatus as a whole).  This approach to solving problems gives me creativity in design that many others cannot hope to accomplish, but it is hard for others to accept things that are different and unproven in engineering.  I think that in most cases (and for sure in my case) it would be extremely beneficial to get the label early on in order to be able to make sense of the difficulties and frustrations revolving around hypo-sensitive hearing and hypo-sensitive tactile sense, mind-blindness, my insufficient short-term memory (extraordinary long-term memory), my difficulty with shifting gears from thinking about a set of words symbolically to understanding a set of words literally, difficulty in recognizing body language, speech intonation, and the accompanying mood swings that baffled me and others around me my whole life.

To get an official label I believe that it allows you to access ADA and that is the main thing.  For me I have a diagnoses of ADD and so I utilize that for the medication that I need (that also happens to help me with AS issues ...Prozac and Adderal), but I haven't AS YET decided for sure to go and get the AS diagnosed officially.  For me the most important thing is recognizing that although I am different, I am not any less then others, but rather I have strengths and weaknesses that I need to work on and develop.  And also to realize that there are skills that can be learned to improve my interaction with others.  That said, I will likely in the near future get diagnosed just for legal purposes.

You already know this, but many scholars believe that Einstein, Newton, Tesla, Edison, Aristotle, Socrates, Michelangelo, Mozart, just to name a handful all were on the Autistic Spectrum.  What does that tell me?  If mankind had a cure for Autism (assuming that it is true that those men had Autism) WHY WOULD we WANT TO MAKE THEM neurologically 'normal'?  That would have taken away all of their HUGE contributions to society.  That is how I look at myself now.  Neurologically normal people are needed.  But so too are those like me.  And at this point society hasn't realized this, but they will, it just takes time and the college of hard knocks.

Permalink Reply by Jared Lee Davis on April 20, 2012 at 2:37pm

That's the word I was looking for that describes me perfectly!  Thanks.  I am also going to get an Occupational Therapist to help guide me through my new job as an Engineer now that I see that you did (I am a 32 year old Mech. Eng. who just found out I had Autism 4 weeks ago although my LISW father knew I had it since he went through school in the early 90's).

Paula A Falocco said:

Here's a definition from http://en.wikipedia.org/wiki/Sensory_defensiveness

Sensory defensiveness is a condition defined as having "a tendency to react negatively or with alarm to sensory input which is generally considered harmless or non-irritating" to neurotypical persons.^[1]

It is not uncommon for individuals to have a few mild sensory defensive traits. However, when multiple defensive traits impact the person's day-to-day life, that person is considered to be sensory defensive.

I also wish I had learned about this stuff a long time ago !

The book 'too loud too bright too fast too tight What to do if you are sensory defensive in an overstimulating world' by Sharon Heller is interesting and informative

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