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One of the great things about blogging is it lets people express themselves to the world.

Whether your are an adult with AS, the parent of an adult Aspie, or maybe you work in the field and have experience with adults on the spectrum, consider contributing to this blog.

If you are interested, send an email to asadults@email.com with your WordPress username, a brief introduction to yourself, and a link to any writing you’ve done, and the request will be considered.

Please allow 24-48 hours for your request to be reviewed.

Asperger’s Syndrome will not be in the DSM-V

http://vitals.nbcnews.com/_news/2012/12/01/15605718-aspergers-disorder-being-dropped-from-psychiatrists-diagnostic-guide?lite

Even though this news was released at the beginning of the month, the impact of the news is still being felt across the entire spectrum.  What does this mean?

  1. Anyone currently diagnosed with Asperger’s, will be grandfathered into the diagnosis known as “Autism Spectrum Disorder”.
  2. Anyone currently waiting for an appointment, or going through testing, will most likely be diagnosed under the DSM-IV.  The fifth edition is slated to be released in May of 2013 (five months away).
  3. Anyone already diagnosed will not need a new diagnosis, unless their clinician or counselor feels some need to re-evaluate you.
  4. While people with Asperger’s will be integrated into the larger umbrella of ‘the spectrum’, your treatment should not change.  As you know, your treatment is decided at the time of intake and is adjusted as your needs require.  Be sure that you communicate your questions and concerns with your counselor – they are there to help you understand what is happening.

Aside of other projects on my plate, my other reason for not posting any sooner, was because I wanted to get a better grip of why this change occurred and try to type this with a more balanced approach.

Since reading about the changes, I have come to understand some positives to this:

  1. You’ll notice a ‘legislation’ page.  On that page, rests the bill for each state that spells out the requirement for states to cover autism-related treatments, diagnosis, and therapies.  With the consolidation of Asperger’s into “ASD”, there is no longer any question with regard to what is covered or how much is covered.  Asperger’s was always part of the autism spectrum, albeit under its own label.
  2. One of the biggest problems discovered by the APA and other clinicians that helped collaborate on this change, was ‘name recognition’.  If you told someone “I have Asperger’s Syndrome”, they would most likely give you looks of confusion; conversely, if you told them that you have “a milder form of Autism”, they might better understand what you mean.
  3. It is my speculation that services for adults (especially in the US) will become more available because the training will become more streamlined.  Academically, the students will learn about autism on the overall – understanding that there’s a severe end (possible non-verbal and non-responsive to most stimuli), and a milder end (Asperger’s).
  4. The umbrella nature of ASD, may also help design treatment plans for people to more effectively manage their ASD.  As support groups become more numerous and widely available, you’ll have the privilege of meeting others on the same spectrum, but to varying degrees.

There were negative points that came to me when I first heard the news, but since the decision is final and the printing of the manual has most likely commenced, I don’t see them changing their mind – rendering any negatives to be moot.

Ultimately, the treatment and therapies that you receive are all dependent on the plan agreed to by you and your clinician, which is why I strongly recommend having a solid dialogue with yours, to ensure that you will still get the same services that you are currently getting.

Asperger’s and Sandy Hook

http://nation.foxnews.com/ct-school-shooting/2012/12/14/abc-news-shooter-autistic-had-personality-disorder

If you suffered a loss as a result of yesterday’s shooting (whether they were Asperger’s diagnosed or not), please accept my condolences for your loss.

Disclaimer:  I do not know the Lanza family, nor do I know anyone or have contact with anyone in my personal or professional lives that know them.  I’m posting this because the media has attempted to bring Asperger’s Syndrome into the story.
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Dating as it relates to Asperger’s Syndrome

In our community, it is often thought impossible for people ‘on the spectrum’ to date, have a relationship, or ‘love someone’.

Anyone you run into, will tell you that dating for anyone can be difficult.  For us with Asperger’s, the concept can be more difficult.  Many of us feel that dating is impossible, others claim it’s a difficulty that makes them not want to engage in the behavior.

Among the things one has to contend with are:

  • The perception and understanding of social cues that may not be obvious in nature.
  • Unexpected or unpredictable touching, or other shows of affection.
  • The concept of reaching out and being social without being asked first.
  • Meeting new and strange people.
  • Having to introduce your significant other to new and strange people.
  • Changes and transitions as it pertains to personal routines.

Even neurotypicals will attest to the fact that there are a lot of dynamics that make a relationship what it is:

  • Trust and support.  Many Aspies feel the need to remain private with their thoughts, especially in personal situations.
  • Understanding your partner.  Ensuring that they understand that you don’t want to be hugged from behind, or maybe that only kissing on the lips is what you’re comfortable with.
  • Being on the same page with your partner in terms of what they want and what you want.
  • Compromise and accepting when change needs to occur.  If you eventually decide to marry your partner, understanding the changes that happen.
  • Many neurotypicals don’t realize that sexual relationships are based predominately on emotion – something that Aspies struggle with.
  • Adaptation to each other’s quirks and personality traits.  Imagine if your partner had Bi-Polar Disorder; how would you adapt to each other?
  • Making sure you have support from people on your side to help you through things that your significant other may not understand.  Also being able to accept advice and input from people whose opinions and intentions you disagree with, is key.

While this entry is placed on the ASA Facebook Page, I had someone message me earlier with a group that I’d like to share.  It’s called “NT Women Who Love an Adult Aspie”.

I volunteer for a non-profit organization in my state that provides services for those with Asperger’s and Autism.  I’ve attended workshops and seminars that they’ve hosted, where the host/moderator themselves was an Aspie, married to a neurotypical.  When I have run into those people, or others that are neurotypical and have an Aspie significant other, I’ve asked them how they do it, and they have responded with:

  • I’m patient with him/her and I have to realize that he/she is wired different than I am.
  • We dated long before we married, so I was able to learn how he/she functions, making our married life that much better.
  • I became friends with his/her family and they helped me better understand him/her.
  • Once it became clear that I cared deeply for him/her, I offered to attend therapy sessions or participate in activities that he/she enjoys; it also helped me understand him/her better.

Having said that, I can conclude that it is possible for NT’s and Aspies to have relationships, but they just require more effort and work than the average relationship.

Services for adults with AS

A topic that is discussed often in our community, is the fact that services for adults with Asperger’s are far-few-in-between.  The lack of services are caused by a number of factors:

  • When considering funding for adults, they tend to slip through the cracks because more money, time, and research is dedicated to helping children.
  • It is said that the symptoms of Asperger’s is more prevalent and more easily noticeable in children, than adults.  Once teenagers become adults, they are considered more independent and will ‘figure things out’.
  • When you don’t have many people interesting in helping adult Aspies, organizations aren’t founded, events aren’t held, and awareness is not brought to the table.

It is heavily assumed that when teenagers, that were diagnosed as children, grow up, will grow out of it, or will develop coping mechanisms as they progress forward.  As more adults are becoming diagnosed with AS in later years (some as young as 30, and some as old as their 60s), it is counter-proving the assumption that in your later years you “outgrow it”.

While it is true that Aspies, when diagnosed as children or teenagers can develop plenty of coping mechanisms to help them adapt to the ‘neurotypical world’ that we live in; the ‘wiring’ never changes.  It’s like a computer: Regardless of what kind of case the computer is housed, the core functions still remain the same.

Anyone who has spent any time in the world of psychology, or are a student of psychology knows that in order for people to get treatment for anything, someone has to get involved.  In order for people to get involved (professionally speaking), money has to be spent.

I was recently asked by Lisa, a contributor of the community, to pass along a petition.  Please keep a few things in mind:

  1. Lisa is a parent of a child ‘on the spectrum’; she herself may have AS and not know it; the purpose of our community is to help each other and promote information that could help increase awareness to those who aren’t familiar with AS, or want to know more.
  2. The Facebook page that talks more about her petition is here.  If you require more information, please visit her page and/or contact her.
  3. If you’re living in America and you follow current events, you’ll know that healthcare has become very entwined within politics.  As community moderator, I would ask that you focus more on the needs of those ‘on the spectrum’ and less on the politics involved; remember Asperger’s affects people regardless of where they stand.

Ways to help you manage your AS

Whenever I run into people that know I have Asperger’s and I have a lengthy conversation with them, they tend to ask me if I’m sure I have it.  I’ll admit that I’ve had doubt of my own diagnosis – some things about me don’t seem very “Aspie”:

  • I grew up with constant change in my life, thus change is part of my structure.
  • I do understand and at times use sarcasm within conversation.
  • I have no problem being social with others, as long as I’m invited into groups and other social scenarios.
  • I have made friends over time, even if I don’t hear from them for months on end.
  • I can read basic social cues and understand the more common of nuances.
  • While unproductive conversation bothers me, I can engage in limited small-talk, as long as the conversation takes a productive turn.
  • While I have a hard time expressing my emotions, I can relate to some people on a logic level, such as providing moral support for someone going through a hard time.

On the other hand, I suppose what people don’t notice about my Aspie tendencies are among the following:

  • I have a sensitivity to noises at the level of a concert or large crowds.  In many cases, I can manage the noise for a short time before having to relocate.
  • I don’t make a ton of eye-contact when talking to people.  When others are talking, I will try and look at them, to appear interested, but eye-contact is still very uncomfortable.
  • For someone who can partially modulate their voice for jocular effect, I do maintain a very dry and sharp voice when I converse with others.
  • Whether chatting on an instant or text message, I still do take things very literally when not required.
  • I am apprehensive about touching certain surfaces or textures with my fingertips.
  • Many of the attachments that the neurotypical population attach to their friends, family, coworkers, etc… I fail to understand.
  • While I have dated in my past, some of the ‘closeness’ and intimate acts and social cues still elude me.
  • I am actually more comfortable being in a space by myself, than around others.  While the presence of others does not completely bother me, I would prefer to not be around others.

I wrote this entry to give our group some idea or suggestions that might help them with managing some of their symptoms.

  1. When you talk to people, don’t immediately tell them that you have AS; depending on your symptoms, they may pick up on it before you mention it.  Neurotypicals tend to notice many more social ‘anomalies’ about the people they interact with than we give them credit for.
  2. If you find that you’re going to be in a noisy room, bring ear plugs (not headphones).  You will still be able to hear conversations, but you may have to focus on a specific person in order to take everything in.
    1. One way that I’ve been able to manage my symptoms is controlled exposure: Expose yourself in bursts to different levels of noise in moderation.  If you enjoy music, make it a point to listen to the music at louder levels, as times goes on.
    2. If you’re in a building or other enclosed space, look for exits or locations of calmest sound.
    3. When you are making plans to be in a social venue, be sure to ask about the environment that you will be entering; whether you ask the host of the venue, or asking a friend who has attended.
    4. Those three bullet points can also be modified for those with visual sensitivities.
  3. While you may not be able to offer moral support on an emotional level, some incidents of tragedy can be universally and logically understood.  If you are not comfortable receiving or giving hugs, you may have to alert the person beforehand that you’re not comfortable, and resort to another cue, such as a handshake.
  4. Many of us on the spectrum have no filter on what we say, or we have a hard time choosing our words appropriately.  Consider entering social scenes with a friend or somebody you know that understands you; ask them to brief you on who you are about to meet.  Sometimes being prepared for a situation can make all the difference.
  5. When it comes down to reaching out to people, ask those people to specify a block of time when calling or contacting is acceptable.  Try to learn quickly that if someone gives you their business card or phone number that it is most likely acceptable to contact them.  Whenever I receive either one, I ask the person when it is good to initiate contact.
  6. If you are someone that has a hard time with change, understand that the neurotypical world we live in, is always changing.  Sometimes change has to occur in an ordered sequence, often on paper.
    1. Remember that often in life, change is a necessity, and sometimes it is needed for legal reasons.
    2. We as people are changing regularly: We get older, we change appearances, we experience life moments that are new and different, and as you get older, your personality and way of thinking also tends to change.
  7. If you see a counselor for your AS symptoms, considering asking them what steps you can take or what methods of treatment could help you live a more productive life.  Nobody is realistically a better judge of what can help you, than your counselor; they know your background, history (both medical and otherwise), and assuming they ask the right questions, they can tailor treatment to you as an individual.
  8. Learn from a mistake I made over six months ago: Avoid the temptation to avoid  partake in something because you have AS – mind-over-matter goes a long way.  Now, along with an earlier suggestion, don’t expose yourself to too much stimulus or discomfort when it’s not necessary, but realize that you still have to live.
  9. I have found that writing things down; be it my feelings or just information in general, can help a situation.  Realize that what you’re reading is part of a blog; sites like WordPress allow you to setup free blogs for the sake of expression.
  10. Everyone on the spectrum has a different form, type, and degree of Asperger’s.  No two are alike and no two show the same symptoms.