Shore experienced regressive autism-Today he is independent

[Guest guest]

Found this on another list and thought it most interesting. In fact it was

an OH MY G-d moment when he desribed self-stim behavior as self-regulaatory

behavior. This will be the new phrase in my book.

*** Shore*

>

> experienced regressive autism, lost functional communication and

> was recommended for institutionalization. Today he is independent, happy

> and successful. He is a world renowned speaker, teacher and an acclaimed

> author. 's

books<http://www.nlconcepts.com/autism-shore.htm#beyond+the+wall%23beyond+the+wa\

ll>explain some of the puzzling behaviors of autism and how to cope with the

> challenges.

>

> *'s Interview*

>

>

>

> http://www.nlconcepts.com/autism-shore.htm

>

>

>

>

>

> *What age did you start speaking and what was your prognosis at that time?

> *

>

> After 18 months of typical development I experienced " Regressive Autism " ,

> which I refer to as the " Autism Bomb. " I say this because it can feel very

> much like the explosive power of a bomb shattering the lives of the person

> with autism as well as family members. It took a full year for my parents

> to receive a diagnosis of " Atypical Development, strong autistic tendencies,

> and psychotic " as well as being termed as the " sickest child " the

> diagnosticians had ever seen. My parents were told to put me in an

> institution. Fortunately, they refused. They convinced the school to

> accept me in a year and I received what we would now term as an " intensive

> home-based early intervention program emphasizing music, movement, sensory

> integration, narration, and imitation. " My speech started to return at age

> 4. By age 5 my verbal interaction skills were about par with what would be

> expected at this age level.

>

>

>

> *When did you realize you were different to everyone else?*

>

> Since age 5 I knew I was different than most other people. I was very

> fortunate in that my parents openly used the term " autism " around the house

> just like any other word. The important implication is that whilst we

> didn't know much about the condition it certainly helped to explain a lot of

> differences. For this reason I advocate telling a child with autism that

> they are on the spectrum as soon as possible and of course in a

> developmentally appropriate manner. Regrettably disclosure to a person with

> autism about their condition commonly occurs later in life, often creating

> much confusion for a person who deep inside knows they have a difference,

> but has no way to conceptualize the situation. In response to this

> challenge I have developed a four-step strength-based approach to inform

> children and adults who have autism that they are on the spectrum.

>

>

>

> *Are you independent/currently employed and if so, what work do you do?*

>

> I help people with autism lead fulfilling and productive lives to the

> greatest extent possible. This mission is accomplished through *Autism

> Spectrum Disorder Consulting* where I engage in the following four

> activities.

>

> First, I give music lessons to children on the autism spectrum. In

> addition to the therapeutic benefits of engaging with music, learning to

> play an instrument provides a real life tool in which to interact with

> others and to get involved in the community by joining a musical ensemble.

> Plus… it's just plain old fun! We need more of that.

>

> Secondly, I consult to schools systems and present on issues related to

> the autism spectrum internationally. At this time I have presented in 39 of

> the 50 states as well as 6 out of 7 continents. Third, I teach courses and

> special education and autism to prospective and continuing teachers at the

> college level. Other courses I have taught include statistics and other

> math courses, computers, and a number of music classes as well. Finally, I

> write books and article related to the autism spectrum. More about these

> publications can be found on my website.

>

>

>

> *Are you married and do you have children?*

>

> Dating was always confusing to me because I never properly perceived

> nonverbal cues. I met my wife in a graduate program in music education.

> We were walking on a beach one day and she suddenly held my hand, kissed and

> hugged me. By then I had a form of social story worked out to help me

> decode if a woman was interested in dating me. That event occurred over 20

> years ago and we have now been married for almost 18 years. I feel we have

> developed a great understanding of each other and life together just gets

> better and better! We have no children as we feel our lifestyle is not

> conducive to good child rearing. However, there are thousands of children

> with autism within bicycling distance of my home – and around the world –

> whom I can play and be with any time I want.

>

>

>

> *Do you have any accomplishments you'd like to mention? (Such as

> education, work achievements, personal accomplishments)*

>

> My latest accomplishment is that I finished my doctorate in special

> education with a focus on the autism spectrum late last year. My

> dissertation *Examining Five Promising Approaches for Treating Children on

> the Autism Spectrum* focuses on matching best practice to the needs of

> children on the autism spectrum. Another accomplishment includes writing

> three books on autism titled

>

> *Beyond the Wall: **Personal Experiences with Autism and Asperger Syndrome

> *

>

> *Ask and Tell: **Self-Advocacy and Disclosure for People on the Autism

> Spectrum*

>

> *Understanding Autism for Dummies*

>

> There are more books and a DVD in the works as well. Yet other

> accomplishments include being married for almost 18 years, as well as

> finding a way to help others on the autism spectrum. Every time I can help

> someone develop greater understanding about autism I feel is an

> accomplishment as well.

>

>

>

> *What age did you start having meaningful conversations (a back and forth,

> rather than just answering questions or talking about your interests?)*

>

> Although I lost functional communication skills at age 18 months, only to

> have them begin to return as a four-year-old, I started having true back and

> forth conversations at age 5. That's when my speech had pretty much

> normalized.

>

>

>

> *What age did you become interested in making friends?*

>

> I have been interested in making friends since about age five. It is my

> sense that people with autism don't want to have friends is a myth. What

> seems more accurate is that those of us on the autism spectrum have a

> different way of making friends. Additionally, some of the skills needed to

> make friends may need direct instruction rather than expecting people with

> autism to learn by mere observation.

>

>

>

> *What special interests did you have as a child? Do you have special

> interests now?*

>

> I had many special interests as a child. Sometimes there was more than

> one at a time. These special interests included:

>

> airplanes

>

> astronomy

>

> bicycles

>

> earthquakes

>

> medicine

>

> chemistry

>

> mechanics

>

> electricity

>

> electronics

>

> computers

>

> hardware

>

> tools

>

> psychology

>

> music

>

> rocks

>

> geology

>

> geography

>

> locks

>

> cats

>

> dinosaurs

>

> watches

>

> shiatsu

>

> yoga

>

> autism

>

> As an adult I still maintain a number of special interests. The strongest

> ones for me at this time include music, bicycles, psychology, and autism. I

> believe engaging special interests of people with autism are the key towards

> success and fulfillment in employment, education, relationships, and in

> other areas of life.

>

> *What type of people do you relate to? Are you drawn to specific

> qualities or common interests?*

>

> As a child most of my friends were older than I was. In later years, many

> were from other countries and cultures. I noted that my experiences were

> common with others on the autism spectrum as well. While people know what

> to expect from their own culture, other cultures do not detect as many

> differences. People from another culture have their own challenges

> integrating into a society and they may be more tolerant or even

> appreciative of people with differences. In fact, Tony Attwoods has

> research on his website indicated that the most successful relationships

> with people on the autism spectrum involves others with difference in

> culture, age, religion, and many other vectors. I tend to be attracted to

> people having passions for various interests. Other specific qualities

> include persons who are honest in the communication rather than giving mixed

> messages. Certainly having interests in common with mine can be helpful in

> making friends but aren't a requirement. Some of my friends are on the

> autism spectrum whereas others are not. I think it's important for people

> with autism to have ties to their community in the form of friendship with

> others on the autism spectrum. However, I think having friendships with

> people outside of the autism spectrum are also necessary towards leading a

> balanced life.

>

>

>

> *Do you have specific routines you like to keep and what coping strategies

> do you use when things change unexpectedly?*

>

> Some specific routines I have include waking my wife in the early morning

> and helping her prepare for her day. I prepare her breakfast and lunch and

> warm up the car during the winter. After she departs I will sleep for about

> an hour and then start work at home. Most of my work consists of giving

> music lessons for children with autism and writing is done at home. Living

> in a home engenders all kinds of domestic routines. In many ways my wife

> and I have a gender role reversal regarding societal expectations of work

> and keeping a home. However, it works well for us and that's what matters.

> I travel by plane about 50 times a year to consult on and present at

> conferences related to autism. Although security and other procedures may

> often seem to be a bothersome waste of time, they provide a sense of

> predictability. Flight delays and cancellations are very common. However,

> there is a routine to those as well. There *will* be a later flight one

> can catch if needed. At worst, an overnight in a hotel near the airport

> will be needed. Fortunately, airplanes is a special interest of mine so I

> have gotten to the point where I know where the good seats are on different

> airplanes, figured out how to increase my chances for scoring the

> ever-elusive upgrade, and even can tell the difference between Boeing

> 747-100's, 200's, and 400's. There is no 300 but there will be an 800.

> Travel is often a great challenge for people with autism. In response to

> that challenge I plan on creating a resource to promote safe travel for

> people with autism.

>

>

>

> *If you could change one thing about neurotypicals, what would it be?*

>

> Greater awareness, acceptance, and appreciation of people with autism and

> other differences would be a great change. I like to think of autism as a

> different rather than a disordered way of being. This does not obviate the

> fact that there can be many aspects of autism that are disordering. Not

> having developed a reliable means of communication, suffering from digestive

> problems and not pooping for 2 weeks, or dealing with sensory issues that

> disrupt interaction with others and learning are all serious problems that

> must be addressed. Through the use of appropriate interventions in the

> educational/developmental/behavioral, sensory integration, and biomedical

> realms we can help people with autism lead fulfilling and productive lives

> *with* their differences.

>

>

>

> *Did you have self stimulatory behavior as a child and do you have any

> now? If so, how do you deal with this in public?*

>

> Reframing self-stimulatory behavior as self-regulatory behavior is more

> helpful in understanding its cause, what it represents, and what to do about

> it. These behaviors serve different purposes such as calming a person down

> or keeping them awake. That said I did have such behaviors as a child. I

> remember my parents telling me to stop flapping my hands. However, if this

> type of behavior is recognized as an effort towards self-regulation, then it

> becomes easier to think about redirecting, rather than trying to stop the

> behavior.

>

>

>

> *How do you deal with sensory challenges when you have to appear at

> occasions such as a wedding or social event?*

>

> Adding structure into these events can be very helpful. Additionally, I

> make sure to take breaks before I become overwhelmed with too much sensory

> input. One example of my structuring a situation is to find a piano and

> route my interactions as the musician of the party. Family parties and

> other socially based gatherings can be very difficult for people with autism

> to navigate. I think it is important to find some way to make sure that

> there is structure in these situations. For example, perhaps a person with

> autism could help with setting the table at a family gathering or given some

> other " job " . A goal to strive for is to educate a person with autism when

> to recognize when a social gathering is unstructured and give him or her

> tools to cope such as what I do when I find a piano.

>

>

>

> *Are you close to your sibling(s) and how was it watching your sibling

> succeed at things that were much more difficult for you, particularly if

> he/she/they were younger?*

>

> We had quite a wild time growing up. I am the youngest. My brother who is

> two years older was diagnosed with mild to moderate retardation. My sister

> who is four years my senior seemed to get all of the " typical " genes of the

> family. I feel very lucky because my parents created a supporting and

> loving environment where people were accepted for whom they were. At the

> same time, they realized that if my brother and I were to lead fulfilling

> and productive lives to the fullest extent possible there would be many

> challenges to overcome. As siblings we still keep in touch and enjoy each

> other's company when we can get together.

>

>

>

> *If you could advise parents about one thing, what would it be?*

>

> When your child is diagnosed with autism, he or she is the same child you

> had before the diagnosis. It's also important to realize that a parent will

> often go through a period of often painful mourning for the child they

> thought or wish they had. It's nothing to be ashamed of and is a natural

> process. Eventually, acceptance of the child comes with the realization

> that there may be many significant challenges to overcome if their offspring

> is to lead a fulfilling and productive life. In short, the potential of

> your child is the same as with every other child – unlimited. The challenge

> is to figure out how to access this potential. That is what interventions

> and educational techniques help us do.

>

>

>

> *If you could advise teachers about one thing, what would it be?*

>

> When I give teacher in-services, one aspect I emphasize is learning

> styles. There is a myth that all persons with autism have visually based

> learning styles. From my interactions with my friends and colleagues on the

> autism spectrum I think it's more accurate to consider the following. While

> most people with autism are visually based not all of us are. Therefore,

> it's important to be sensitive to the possibility that a person with autism

> may favor the kinesthetic, aural, or other modality for learning. What can

> be said is that whatever the learning style is it will probably be to an

> extreme.

>

>

>

> *If a person close to you is upset about something, how does it affect

> you? Do you feel empathy for them? *

>

> It's a two-step cognitive. At first I will fuse to that other person's

> emotion and then start wondering why I have such a strong emotion that seems

> out of context for a situation. At this point I will then ask the person I

> am near if they are having that same emotion. Often I will find out they

> are. For example, I might feel anxious about something but can't quite put

> my finger on it. I then may ask me wife if *she* is having anxiety about

> something. Often she will indicate she is. With confirmation of her

> emotional state I am then able to separate from her emotion and feel *for*her

rather than just fusing to the emotion. That is empathy. Most people

> develop empathy just through observation of another person's emotional

> state. For many people with autism, achieving an empathic state require

> cognitive step like I just described.

>

>

>

> *Can you assess how people are feeling by their expressions? If not, how

> have you learned to deal with this?*

>

> Reading facial expressions can be very difficult for me. However, I can

> often perceive when someone is having an emotion – just not the specific

> one. Therefore, I will ask probing questions to verify that I am detecting

> an emotion and to find out what it is.

>

>

>

> *Can you drive a car and do you have a license? If not, does it upset you

> that you are not able to drive?*

>

> Although I drive and own a car, I much prefer to ride my bicycle because

> it is more fun and gives me the proprioceptive and vestibular input I seek.

> Specifically, for people on the autism spectrum it does seem that fewer of

> us drive then in the general population. That may be due to the greater

> incidence of sensory and perceptual challenges in people with autism then in

> the greater population.

>

>

>

> *Do you have anything you would like to add?*

>

> With today's research and intervention, the " Bomb " in the term " Autism

> Bomb " need not be as destructive as one might initially fear. People with

> autism have a multitude of strengths that can be beneficial to everyone. The

> potential of those with autism is unlimited. Finding ways to engage the

> strengths of people with autism will greatly increase the chances for

> leading fulfilling and productive lives. It is the challenge of persons

> supporting those with autism, in concert with people on the autism spectrum,

> to find ways of unlocking this potential.

>

>

>

> *We are honored that has taken the time to share his experience.

> If you appreciate it too, **PLEASE** be kind enough to let him know!*

>

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>

>

> Sharon Gudger

>

> Special Education Consultant

>

> Child Advocate

>

>

>

> sharongudger@...

>

>

>

> *

> *

>

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> that the statements made in this communication are in no way legal or

> medical advice, as I am not an attorney, nor am I authorized to give such.

> The statements made by me or in any of my communications are my opinions

> based on my training as a Parent Advocate by the GA Advocacy Office-the

> Protection and Advocacy Agency of Georgia, Federally funded Parent Training

> Center, Council of Parent Advocates & Attorneys, IDA, CHADD, LDA, and the GA

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--

Sara - Life is a journey- we choose the path.