Asperger’s – The Itchy Tag Effect

Ever been bugged by an especially itchy wool sweater? Or been horrified at the shrill sound of fingernails being dragged down a chalkboard?

Just imagine if your day was filled with such experiences, and you and your loved ones were at a loss as to how to understand or help.

Most of us familiar with the basic symptoms associated with Asperger Disorder understand that people with Asperger’s often seem hypersensitive. Children with Asperger’s today often readily voice their discomfort with textures, noises and scents they find uncomfortable, and this discomfort has become, if not an accepted diagnostic criteria, a very familiar phenomenon for parents.

In their April, 2009 article Talent in Autism, Simon Baron-Cohen et al describe sensory hypersensitivity, a form of enhanced perceptual functioning typical of many individuals with autism spectrum conditions (ASC). Indeed, the article states that “studies using questionnaires such as the sensory profile have revealed sensory abnormalities in over 90per cent of children with ASC.” How individuals process information (both cognitive and sensory) may be highly impacted, even organized according to, these differences: and the differences may cause distress, but also predispose to unusual talent.

Sensory: oversensitivities often reported by adults with Asperger’s include:

Tactile: oversensitivity can cause the individual to feel physical sensations such as light touch, itchy fabrics, hugs and bare feet as unbearable.

Visual: oversensitivity can cause the individual to find fluorescent lights, bright sunlight, flashing lights and overly stimulating visual environments (e.g. casinos) to cause great discomfort.

Auditory: oversensitivity can cause the individual to find auditory input to be impossible to ignore. Foreground and background noises can compete with one another, leaving the listener unable to selectively attend. Shrill or high pitched noises, such as those of dental drills, children’s squeals or shrieks, and blenders can cause extreme discomfort. Discordant music can cause discomfort.

Gustation: oversensitivity can cause the individual to feel uncomfortable with new tastes, or to find them intolerable. Children with gustational oversensitivity can prefer the same foods over and over again, refusing new foods and finding new flavors distressing.

Olfaction: Current research does not support evidence of oversensitivity for the sense of smell.
Clinicians who work with adults with Asperger’s often find that this sensory hyperacuity has been coped with and channeled in creative ways.

Following are some of the coping mechanisms reported to me by clients who have struggled with sensory oversensitivity without knowing exactly what the problem was.

Clients who struggle with tactile hypersensitivity often:

o Wear soft, heavily washed, loose-fitting clothing, such as t-shirts and baggy shorts
o Avoid body piercings and tattoos
o Find showering unpleasant due to oversensitivity to sensations of water and changes in temperature
o Remove tags from clothing, which can be itchy
o Choose specific brands of clothing, underwear and shoes which provide minimal restriction
o Find ways to gain tactile input which is soothing, such as hair-pulling, hair twirling, hand tapping, etc.
o Enjoy stroking soft materials, such as the fur of cats

Clients who struggle with visual hypersensitivity often:

o Avoid visually overwhelming environments
o Wear sunglasses or hats to minimize bright lights
o Remove lamps or bulbs in work areas to reduce glare
o Cover fluorescent lights
o Close blinds during work time to prevent interruption by visual stimuli such as passers-by
o Keep work areas neatly organized to prevent becoming visually overstimulated
o Find visually predictable environments, such as video games, rewarding and comfortable

Clients with auditory oversensitivity often:

o “Tune out” when conversation becomes too overwhelming to attend to
o Avoid interacting in crowded settings, such as parties, or use substances to mediate oversensitivity
o Rely on electronics, such as iPods, to provide predictable auditory stimulation
o Wear noise-cancelling headphones when concentrating or meditating
o Spend quiet, solitary time to “recover” from overstimulating experiences
o Avoid telephone and cell phone use to minimize unanticipated auditory input
o Hum, sing or make noises to cancel out noises beyond individual’s control
o Listen to music excessively

If you have noticed your own or a loved one’s sensory hypersensitivity, be sure and treat it as condition to take seriously. Some researchers (see Belmonte et al., 2004) hypothesize that this sensory “magnification” may result from neural overconnectivity in sensory parts of the cerebral cortex. While research on brain structure and development differences is still being conducted, sensory oversensitivity in adults with ASC is well documented, and is most likely physiologically based.

Implementing some simple interventions can help the individual with Asperger’s feel much more comfortable in the world. An increase in sensory comfort can have drastic effects on cognition, avoidance behaviors and the ability to attend to other stimuli. Many of my clients report irregular sleep/wake cycles, with much “down time” spent recovering from situations which cause sensory overload. Taking care of yourself ahead of time when facing a sensory challenging setting can prevent “sensory hangover”, and is part of taking care of yourself.

Stay tuned for more on how sensory oversensitivity may be a contributing factor to talent and giftedness so often seen in adults with Asperger’s.

Asperger’s Syndrome – The Pardox of Social Impairment and Profound Social Disconnectedness

The intricate labyrinth of this paradox exists within the assumption that a social impairment in and of itself, however that is defined and experienced in each individual (AS) life is tantamount to social disconnectedness

Gregory B. Yates, in his writing, “A Topological Theory of Autism,” explains that the three founders of “autism”, Eugen Bleuler, Leo Kanner, and Hans Asperger, “clearly saw other features of autism as secondary to social disconnectedness.” and emphasizes that this disconnectedness “…is the central, eponymous feature of autism it is the primary feature…”- “it is social disconnectedness that most defines autism…”

The degree to which there are differences, generally, between autism and Asperger’s Syndrome (AS), more specifically, in terms of this social disconnectedness varies greatly with each individual. It has been my experience that the manifestation of this social impairment and social disconnectedness also varies greatly between those with more classic forms of autism as opposed to those with Asperger’s Syndrome (AS). Even within those with AS the extent to which this paradoxical synergetic syndrome is present depends upon many individual factors including age of diagnosis, intervention, support, counselling and general educational intervention.

I experience this social disconnectedness, as an adult with Asperger’s Syndrome (AS), in ways that I imagine are more difficult for me and others like me than they may be for those with more classic autism. It is the awareness that one has with AS that often brings with it a more painful lack of connection. Many, like myself, with AS, to varying degrees, have strong desires to try to be as social as we can. This is, however, coalesced with what is an equally strong aversion to being social.

This paradox of simultaneously desiring and feeling aversion to social connectedness is born out of a lifetime of difficult and painful experiences in the social realm coupled with a lack of understanding and difficulty in truly being able to feel a sense of joining in what others are experiencing as a shared experience.

I am keenly aware, in the social realm, that while I have learned to do many things that one is supposed to do from all accounts and appearances I do not experience them in the same way that neuro-typicals (NTs) do. There is still this feeling of not totally understanding the feeling experience of the shared social experience. This reality is accompanied by the anxiety and the stress (overload to my system) that much of this activity produces within me. To state it outright and forthrightly, I do not derive joy from anything social.

My experience of joy is very much a by myself internalized proposition. Knowing this can be, at times, a source of frustration and pain. Even when I am social I am not really totally there. It’s difficult to explain this but as Yates explains, “Autistic people live like Tantalus*, with the fluent social interaction of others suspended before their eyes, out of reach.” I can relate to this. To try to actually join in and feel a shared experience socially is like reaching for forbidden fruit that moves ever so slightly back every time I reach up and forward toward it. I have been in many a social situation where I do just end up observing because the social interaction of others is suspended out there before me and for me is out of reach in terms of experiencing it the way that others appear to be and report experiencing shared meaningful times that fill them up. Trying to socialize, which I don’t mind in small doses, despite the pain of it all, for me is so stressful most of the time that unlike my NT friends empties me out leaving me just wanting to retreat back into my own world.

The fact that most NT’s describe socializing as being a “filling up” experience that adds something to them and I know that it is the opposite for me, I don’t see this as needing to be defined as anything else aside from a profound difference after its recognition.

Yates continues with the assertion that, “Social disconnectedness is the horse of autism: Secondary features are baggage in its cart.”

Not everything about this social disconnectedness is experienced as baggage. That said, I think it would be highly negating if I were to say that this disconnectedness doesn’t in fact leave an adult with AS with some baggage. It does.

The most difficult aspect of this baggage, which I’m sure varies with each adult with AS, though having, no doubt, some common themes, is that we are left to fend for ourselves with it. There are (with rare exceptions) no services for adults with Asperger’s Syndrome.

In my own experience, the mental health issues and co-morbid issues that can exist with AS and its incumbent or subsequent baggage, are not effectively being dealt with by traditional Mental Health delivery systems. While there are some therapists who will assist adults with AS they are not accessible to those without the funds and even then they are rare as most, if not all resources are currently focused on children with autism and/or Asperger’s Syndrome.

Today’s children are going to be tomorrow’s adults. The baggage that they will encounter as adults will still be sitting here, as is mine and that of other adults with AS. I continue to not understand the lack of services for adults and for those who are transitioning from adolescents to adulthood with all its more complicated issues.

I must stress here too that not all that AS brings to my life is about baggage. In the arena of social disconnectedness and trying to navigate the world of social beings however, yes, I have some baggage that I am continually aware of, working through, and trying to come to terms with. In this area, this baggage does impinge upon my self-acceptance, still, though I’m getting through that more now too. This is the reality of a paradox that adults with AS must not only live with but wrestle with in order to not be left feeling less than. This is why I stress that we are differently abled as opposed to the common societal stereotypical assessment that we are just disabled

Yates also asserts, “While some secondary features of autism are unpleasant, in a social world one autistic trait is truly devastating. That is autism’s defining characteristic itself – social disconnectedness.

I have found this trait quite devastating. While I continue to make progress in terms of what I have learned about mapping my social efforts I continue to find them often as painful as they are anything else. I am still in the process of dealing with this fact. The fact that I have to live with a high degree of social disconnectedness that I have enough insight about to feel saddened by at times. It is here, I have learned, that my self-acceptance depends upon my ability to continue to learn and grow in my ability to use compensatory strategies to meet my needs in the adult arena of relating.

Yates states that, “Autistic people vary in their desire for social interaction. However, even those who do not desire social contact can be devastated by its lack, for thriving in human society depends on social ability.”

I agree totally with Yates here. I have known other adults with Asperger’s Syndrome. I’ve seen vast differences between them and myself in many respects. I’ve also noticed that there are numerous and vast differences between men and women with Asperger’s as well. (More on this in an up-coming article)

I have been devastated by “its lack”. The lack of socialization in my life. By what remains (or certainly feels like) despite my best and most fervent efforts to socialize, relate, and be available in my primary relationship, a feeling of disconnectedness that often brings me back to a familiar pain that like a brick wall sitting between me and the world of social ability, has and continues to affect my thriving in the way in which most people define and value thriving

All is not lost here however. I am a great believer that even when diagnosed with AS in adulthood, as I was at the age of 40, we can make progress. I have learned a great deal. I continue to learn to compensate and to let those closest to me know what I need in order to be able to build bridges to them and have them build meaningful relational bridges to me.

I also believe that despite not experiencing a kind of social ability that clearly indicates thriving to our human society, I am thriving and will continue to build upon this thriving in my own way as defined by my own understanding, needs, wants, and my continued dedication to straddle what is at times a very unforgiving philosophical paradox.

What is defined as social impairment, again, can be construed as disabled or contrastingly as differently abled. One must take to task the notion that we are all supposed to be the same or that we all must have the same values and capacity in the social realm.

Having Asperger’s and knowing it should be a gateway to understanding not some societally imposed label that implies lack and that sees that lack pathologized.

It is my hope and my intention the more I come to understand my Asperger reality and the more I write about it that my readers will come to appreciate the differences that manifest in many ways that are the indicators of difference in brain functioning. That NT brain wiring is not superior to the brain wiring of those with Asperger’s and visa versa. This is all about difference and more specifically, acceptance of that difference and allowing each group of people to live as they must and flourish as they will.

To this end, coming out of this most basic difference in social ability and social connectedness or defined disconnectedness it is my hope that the system and parents of children with AS will stop believing and insisting on trying to normalize the autism/asperger’s out of their children. We are born the way we are for good reason. Let society expand its definition and understanding of worth, and change itself, and stop requiring that those of us on the autistic spectrum change or have to fit the NT mold in order to matter, to be functional, and to be able. We are very gifted and talented in our own ways. Who we are needs to be “good enough”. It needs to be “good enough” firstly to parents, secondly to society and equally to each adult diagnosed and left to fend for themselves, with Asperger’s, in adulthood.

We need bridges of understanding to and from each other. We do not need to be the same. We are all okay as we are, differences and all.

© A.J. Mahari – All rights reserved.

• Tantalus – (Greek mythology) a wicked king and son of Zeus; condemned in Hades to stand in water that receded when he tried to drink and beneath fruit that receded when he reached for it. (Source: www.dictionary.com )

Finding Support for Adult Autism

Toys are a great way to stimulate autistic children, but what about adult autism? All autistics, regardless of their age or degree of autism require proper care and support. That being said, although high functioning autistics do require support, they don’t always require constant care like those who have low functioning autism.

High functioning autistics (HFA)

High functioning autistic adults can be very successful and live relatively normal lives. They can work, care, and support themselves, live independently, and in some cases, even have a family. However, in order to be successfully independent an HFA adult must have had the proper education growing up. If an HFA child is effectively taught and understands accepted behaviors and social responses, by the time they reach adulthood, they can contribute to society like everyone else.

Of course, not all high functioning autistics are independent, and even those that are may still struggle with finding suitable employment and suffer with social interaction. For this reason, those with high functioning adult autism require support to help them take care of themselves, and live the best life they can live.

Support for high functioning autistics

The following are ways in which HFA adults can find support:

Locally – Finding support locally may be a challenge if you don’t know where to look. Nevertheless it doesn’t hurt to try searching with the help of:

– Health care providers – Talk to any doctors or those who provided you therapy over the years. They may be able to get you in touch with local organizations or support groups.

– Government – Call or visit the government website to learn about support for those with adult autism

– Yellow Pages – Search the phone book to see if any support groups are listed locally

– The internet – Conduct a search by using the name of your city and “autism support”

Online – There are many support groups online. The following are some websites that offer support and may be helpful for employment and information:

http://www.csaac.org

http://www.udel.edu/bkirby/asperger

Low functioning autistics

Low functioning adult autism means that these individuals are unable to measure up to societal standards and can not function independently, regardless of how they are educated as children. Therefore, these autistics typically live at home with their parents or in special residences where their needs can be continually addressed. Nevertheless, due to the fact that residential facilities or group homes are quite costly, many low functioning adults (and even some HFA adults) live with their families.

In these cases, the ones who require support and assistance are the caregivers. Caring for an autistic can be extremely overwhelming and stressful, especially when you are faced with:

– Learning everything you can about adult autism

– Locating the necessary services, treatments and supports needed

– Dealing with different health care service providers

– Financial burden

– Socially isolating yourself in your home, as making social calls can be difficult

– Focusing all your attention on one child and giving less attention to the rest

– Discrimination from others

Support for caregivers of autistics

There are different services you can look for to help you cope with adult autism, such as counseling, reducing stress, learning new techniques, financial advice, etc. Support can be found in the following ways –

Locally – The same methods used in HFA support listed above can be used to find local support.
– Friends – If you have made friends who also have autistic children, use them as support and find out if they have any new information they can provide for a particular problem you may be facing.

Online – There are many support groups online. Check out the following:

http://www.autism-society.org

– [http://www.autismsociety.ca]

http://www.bbbautism.com

http://www.autismlink.com

http://www.udel.edu

Each provides you with information, resources and support groups for adult autism.