People with Autism Don't Like to be Labeled "Autistic People"

People with Autism Don't Like to be Labeled "Autistic People"

Nobody Likes to be Labeled

The country’s fastest growing developmental disorder, autism is now a national epidemic. One in every 91 births results in a diagnosis of autism spectrum disorder. With an annual growth rate of 10 to 17 percent in the U.S.A., a new case of autism is diagnosed every 20 minutes, 24,000 new cases every year. From the best current statistics, a total of 1 to 5 million Americans carry a diagnosis on the autism spectrum.

Autism is a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Children and adults with autism have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. As a “spectrum” disorder, autism affects each individual differently and to varying degrees.

In recent years, since the introduction of Augmentative Communication devices, such as portable laptop computers that provide language for the person with autism, we have now come to understand that many people with autism have a broad range of feelings, interests, opinions, and keen intellectual capacity. Just like everyone else, at the deepest core, people with autism are sweet, loving people who want to have close relationships with others, They just find it extremely difficult and confusing to express the thoughts and feelings that are locked up inside, Thus, developing and maintaining friendships is very, very challenging and just like anyone else, people with autism can often feel lonely and isolated as a result of their disabilities.

People often misunderstand this and believe that individuals with autism want to be alone. That simply is not true.

Some in the public believe or misunderstand the occasional unique talents of people with autism as indicating that they are "autistic savants" with special extra sensory perceptions, photographic memories or idiosyncratic genius. This is not usually the case, even though some persons with autism have surprising gifts—some never forget a name, others who may appear unable to communicate normally may be able to recite accurately the first 200 names in their video collections.

It is all too easy to stereotype people with autism as bizarre and to forget the possible richness of their inner world of the possibility of their living a satisfying life. Still, we should not ignore the real challenges faced by people with autism nor the traits that can interfere with adaptation to life skills and to relationships.

Overview of Autistic Traits*

Inappropriate laughing or giggling
No real fear of dangers
Apparent insensitivity to pain
May not want cuddling or in contrast, may hug too forcefully
Sustained unusual or repetitive play
Uneven physical or verbal skills
May avoid eye contact
May prefer to be alone
Difficulty in expressing needs; may use gestures
Inappropriate attachments to objects

Insistence on sameness
Echoes words or phrases
Inappropriate response or no response to sound
Spins objects or self
Difficulty in interacting with others

Insistence on Sameness

Easily overwhelmed by change, even slight changes.
Highly sensitive to environmental influences, and sometimes engage in rituals.
They are anxious and tend to worry obsessively when they do not know what to expect. Fatigue, and sensory overload easily throw them off balance.
Transitions are difficult.

Impairment of Social interaction

Seems naive, unaware of "the ways of the world", egocentric.
May dislike physical contact
Talks "at" people instead of to them
Does not understand jokes, irony, or metaphors
Monotone or stilted tone of voice
Inappropriate gaze and body language
Insensitive and lacks tact
Misinterpret social cues, doesn't understand facial expression and body language.

Restricted Range of Interests

May have intense fixations (sometimes collecting unusual things).
They tend to relentlessly "lecture" on areas of interest, ask repetitive questions about interests, and have trouble letting go of ideas.
They often follow their own inclinations regardless of external demands, and sometimes refuse to learn about anything outside their limited field of interest.

Sensory Issues and Poor Concentration

May often seem off task and distracted by internal or external stimuli or sensory issues.
Acts disorganized, not knowing where to start or end.
Unusual reactions to different stimulus

Poor Motor Coordination

May be physically clumsy and awkward. May seem accident-prone and have a hard time playing games involving motor skills.
They often have fine motor deficits that can cause penmanship problems that affect their ability to form letters or write clearly.

Language Difficulties

May be nonverbal, minimally verbal, or may seem behind in communication. In contrast, may be very advanced (sound like a walking dictionary or encyclopedia).
Tend to be very literal.
Their images are concrete, and abstraction is poor.
May give the impression that they understand what they are talking about, when in reality they may be merely parroting what they have heard or read.)
Rely on pictures more than understanding of words and may have reading difficulties
Poor auditory processing.

One might say that a person with autism struggles with autistic challenges or has many unusual autistic behavior patterns. That would be correct, because along with communication problems and difficulties in making and maintaining friendships, many people with autism struggle with sensory integrative dysfunctions. This may cause a person with autism to feel a much more exaggerated sensation across some or all of their senses. In some instances, sounds can be heard as very loud; lights can be seen as extremely bright; certain foods and flavors may taste very strong or unpalatable; and physical sensations can be very irritating.

Some people with autism find that it brings them comfort to rock back and forth or spin in circles in a manner that appears odd to others.

Still others find it threatening to be in crowds or groups of people because they may have difficulty reading another person’s facial expressions and as a result, may misinterpret another person’s intentions.

In this field, words and terms can be important. Regardless of how high or low functioning a person with autism may be, he or she is a person in his or her own right, first and foremost. He or she is a person who happens to be struggling with and trying to deal with the difficult challenges and symptoms of an autism spectrum disorder to a greater or lesser degree.

We believe it is more inclusive, sensitive and respectful to refer to a person who is diagnosed with autism as a “person with autism,” not as an “autistic person.” The same idea applies when you speak to a parent who has a child or an adult with autism. It shows more respect to refer to them as a parent of a child with autism, not the parent of an autistic child. Just like all parents, we love our children, whether they have a diagnosis on the autism spectrum or if we are parents of “typical” children. A parent is a parent, regardless of the challenges our children struggle with. If we refer to a person on the autism spectrum as a person with autism, not an autistic person, we better allow that person their dignity as an equal member of society.

If people reading this wish to contact you or ARCHway how can they do that?
People with autism, service providers or parents of individuals with autism who are wishing to undertake lifespan planning and planning for housing needs of their transitioning teens or adults with autism may contact ARCHway at www.myarchway.ning.com and join our social networking site to stay in close contact with us.

Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4

Why Parents of Adults with Autism Need to Develop a Written Life Plan

A written life plan helps ensure your adult child’s needs are thoroughly understood by future caregivers.

Since none of us can be sure what the future holds, it is critically important for a parent of an adult on the autism spectrum to develop a written life plan for their loved one well before their adult child may need to leave the family home. A life plan helps parents answer the question, “What will happen to my child when I am gone or unable to care for him or her?” A life plan spells out in detail the personal needs and preferences of the individual with autism. It also lays out a parent’s intentions for future care of their adult-child throughout the life-span and clarifies financial and legal arrangements made on behalf of the person with autism. Life planning is a key component of the family training and autism education services offered through the Foundation for Autism Support and Training (FAST).


Why You Need to Develop a Life Plan for a Person with Autism

A parent of an adult with autism may wrongly assume that their other children or a sibling will take care of their adult child with autism, once they are gone. This arrangement is frequently unworkable.Many parents of adults with autism are so busy dealing with the day- to- day care of their loved ones, or are under so much stress dealing with the extreme demands of parenting, that they have not planned for their children’s futures. Some parents are not aware that life plans are needed and valuable, while others are confused about how to write a life plan or where to seek help.Many parents of adult children with autism believe they will continue to be the primary caretaker for the remainder of their loved one’s life. Such unrealistic and magical thinking does not consider the following possibilities:

· The fact that most adults on the autism spectrum outlive the parents;

· The adult with autism may develop behavior patterns that may create a serious, unanticipated crisis situation that would make it unsafe for the loved one to continue living at home;

· The parent may wrongly assume that other children will take care of their disabled sibling, not realizing that in reality, this plan would be unworkable or unrealistic;

· The extremely undesirable circumstance where the consumer with autism might become the caregiver to his own parent;

· The parent may erroneously assume that the government will take care of his loved one sufficiently or find quality group homes or quality residential facilities.

· Avoiding or delaying the process of life planning could eventually cause a loved one with autism to go through some very rough times in the future or end up in large residential facilities where the individual’s quality of life is greatly reduced.

· Some current financial benefits may be interrupted, which would affect the consumer’s quality of life. · New caregivers in group homes and residential facilities may have difficulty understanding the consumer’s actions, desires, preferences, communication patterns, etc., without written guidance.

· Without written details of a parent’s wishes and desires, future caregivers may unknowingly go against the parent’s wishes for their loved ones.

· Imagine how confused and upset the consumer would feel not knowing where his next meal is coming from or where he will sleep that night! If life planning is accomplished before a crisis erupts, parents can gradually plan for their adult child’s future, and managers and staff of small residential facilities, group homes, or supported housing options in the community can get to know the consumer’s need and behaviors, which will determine what type of residential setting and residential care will best address his or her emotional and therapeutic needs.

Life Planning Services can and should be a centerpiece of ancillary family training and autism education services offered by supported and alternative community housing providers and day program services providers and vendors. Recommendations and resources should also be provided to help families find experts in special needs law and financial planning.

If people reading this wish to contact you or ARCHway how can they do that?
People with autism, service providers or parents of individuals with autism who are wishing to undertake lifespan planning and planning for housing needs of their transitioning teens or adults with autism may contact ARCHway at www.myarchway.ning.com and join our social networking site to stay in close contact with us.

Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4

Augmentative Communication news stories with Karen Kaye-Beall and Tyler

Augmentative Communication news stories with Karen Kaye-Beall and Tyler

If you would like to see some short news shows that feature Karen Kaye-Beall working with her son Tyler Beall on an augmentative communication device and also see a range of AAC devices in the Foundation for Autism Support and Training - Augmentative Communication Showroom and Demonstration Center, go to www.myarchway.ning.com and become a member (free of charge). Scroll down the far left hand margin and you will find the links to a variety of news reports.

There is also a very good introductory video on You Tube on this subject:

http://www.youtube.com/watch?v=Eb_URYj_L_k

Although this You Tube video primarily features Dynavox products, by no means is Dynavox the only manufacturer.

Here is a list of only a few of the hundreds of other manufacturers. This list represents the devices we have in our AAC showroom and does not necessarily constitute an endoresment. Some manufacturers were kind enough to donate a sample device to our non profit showroom, some provided signficant discounts, others did not cooperate, so we had to purchase a few devices to have a comprehensive sample of devices.

These prices were 2009 prices so do your research with each company to get up to date pricing.

My son Tyler is using a green Vantage Lite (by Prentke Romich) with Picture Word Power added onto it. You will find that info below as well. We really like this device and software for Tyler, but keep in mind, a qualified speech and language pathologist must do a proper assessment to determine which device will best serve your chld or adult with autism. Check with your school system's special education department to see if they have an Assistive Technology Department. If so, try to arrange an AAC assessment free of charge for your child.

If you can not get that service where you live, call any of the vendors below, especially Dynavox or Prentke Romich to speak with their Speech and Language Pathologist to see if they can provide you with the name of a qualifed expert you could hire privately in your area for an AAC assessment. Other vendors below may also be able to provide that advice and referral information.

Little Mack, Ablenet Inc. $109. 800-322-0956

Step by Step, Ablenet Inc $140-179. 800-322-0956

Talk Pad, Frame Technologies $99. 920-869-2979

Lingo, Ablenet Inc $179. 800-322-0956

Voice Pal 8K, Adaptivation, Inc. $219. 800-723-2783

SuperTalker, Ablenet Inc $375. 800-322-0956

Go Talk 9, Attainment Corp. $199. 800-327-4269

Go Talk 20, Attainment Corp $249. 800-327-4269

Chat PC, Saltillo $2020-$2800 330-674-6722

Auggie, RJ Cooper, $2000 800-752-6673

Mini Auggie, RJ Cooper $1149 (case $49) 800-752-6673

Vantage Light, PRC, $7000-$8000. 800 -262-1933

Dynavox V, DynaVox/Mayer-Johnson 866 - 396-2869$7500-$8500

Speaking Dynamically Pro, Mayer-Johnson Co. $519 + Picture WordPower add on +$350. 800-588-4548

For further information on augmentative communication devices and how they can help individuals with autism, go to: www.myarchway.org and click on the menu choice called Augmentative Communication.

For those interested in finding community housing options for adults with autism as part of life planning, go to www.myarchway.ning.com and join ARCHway. You will be invited to participate in free webinars in the near future on developing community housing options for adults with autism.

To see our public service announcement on autism housing that has been seen by nearly 15 million people to date, go to You Tube and search the term "autism housing" or go to: http://www.youtube.com/watch?v=Jtdo6Zh4ok4

Karen Kaye-Beall, director of ARCHway-FAST

What goes in a Life Plan for Adults with Autism Spectrum Disorder?

What goes in a Life Plan for Adults with Autism Spectrum Disorder?

A life plan for an adult on the autism spectrum is a critical document developed on an ongoing basis that details a comprehensive plan for your loved one’s life.

A Life Plan should include a parent’s specific wishes and desires for their adult child’s future living arrangements throughout the lifespan.

The information in a Life Plan is then used by people who subsequently care for the adult with autism when the parent is no longer the primary caretaker.

The plan should be reviewed annually as the consumer ages and the family situation changes, and at least every three years to ensure that legal documents are still up to date;

The plan containes legal planning documents such as wills, special needs trusts, arrangements for guardianship and guidelines for establishing or maintaining state and federal benefits;

Financial planning in conjunction with legal planning that will safeguard SSI and Medicaid benefits, and inheritance;

Financial planning to ensure that the “extras” in life that families provide--cable TV, vacations, favorite books and CDs, favorite clothing styles--are continued;

Predictions of probable medical needs and desired interventions;

Residential needs and desired living environments such as alternative housing options, residential facilities, group homes, and supported living options in the community;

Details on the consumer’s likes, dislikes, preferences and unique personality features;

Instructions for final arrangements and burial plans;

Detailed choices a consumer may wish to make beyond basic food, housing and medical needs;

Specifics on how the consumer may have control over his/her life choices;

Assurances are detailed that someone the family knows and trusts will be watching over and advocating for their loved one;

The life plan may also provide a schedule or example of a typical day in the life of the consumer.

For further information of Lifespan Planning for people with ASD go to www.myarchway.org and go to the Lifeplanning menu choice.

For those interested in finding community housing options for adults with autism as part of life planning, go to www.myarchway.ning.com and join ARCHway. You will be invited to participate in free webinars in the near future on developing community housing options for adults with autism.

To see our public service announcement that has been seen by nearly 15 million people to date, go to You Tube and search the term "autism housing" or go to: http://www.youtube.com/watch?v=Jtdo6Zh4ok4

Karen Kaye-Beall, director of ARCHway-FAST