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Stephen Shore "TITLE: Life On and Slightly to the Right of the Autism Spectrum ."
Wednesday, December 3rd
at 9 p.m. (Eastern), Note portions of the text have been edited for
spelling and grammatical errors, while other text with errors was left
in tact in the context of the chat.
Moderator {public msg} Good Evening and Welcome to Life On and Slightly to the Right of the Autism Spectrum with Stephen Shore, we will be starting in just a minute or two
Ron {public msg} oh, my apologies tally... thanks for being a veteran
Neenee {enters}
Jvjgmom {enters}
Ron {public msg} let me throw a word in before we start... we can use your help answering online inquiries on Unlocking Autism's Help Wanted bulletin board.
nay {enters}
Ron {public msg} write me at admín@talkautism.org if i can help you
Ron {public msg} it's available for UA's home page, then press Expertfind logo
Moderator {public msg} Please welcome Stephen Shore our guest speaker. Would you like to give us a little background?
Stephen Shore {public msg} Sure
Stephen Shore {public msg} I am here to type about life on and slightly to the right of the autism spectrum.
Stephen Shore {public msg} The short story is that I was hit with the autism bomb at age 18 months and lost all verbal ability, had tantrums, self-abusive behaviors, etc.
Stephen Shore {public msg} Somehow between then and now I am finishing a doctoral in special education with a concentration in the autism spectrum. I also work with children and adults on the autism spectrum as well as consult and speak about the autism spectrum internationally.
Mommyo {public msg} ?
Stephen Shore {public msg} And wrote, Beyond the wall: Personal experiences with autism and asperger syndrome.
Stephen Shore {public msg} Also, in view of the fact that we spend about 75%-80% of our time as adult, I feel it's also important to work on issues adults face such as advocacy and disclosure, relationships, employment, and high education.
Stephen Shore {public msg} So, why don't we start with a few questions?
Jvjgmom {public msg} ?
Ron {public msg} ?
Stephen Shore {public msg} mommyo has a question.
Mommyo {public msg} Do you have memory of the time when you didn't speak and had behavioral issues? If so how did you feel? Did you feel trapped in a body that did not work the way you wanted it? Or were you in a world of your own and happy?
Autismgreen {public msg} ?
Stephen Shore {public msg} I do remember that time. It was a period of frustration due to not being able to communicate my wants and needs. It never occurred to me that I couldn't talk.... I just didn't.
lnewland977011 {public msg} We are now living in a different era where we know more about AS and are young adults have a better sense of themselves. What are the guidelines for disclosing in a current relationship?
Denise in mn {public msg} at what age do you recommend starting a child with autism, and what instruments would you suggest?
Stephen Shore {public msg} I was very lucky in that I had parents that seemed to instinctually know what I needed and didn't listen to the drs' recommendations for institutionalization.
Moderator {public msg} lnewland, I will add you to the list
Stephen Shore {public msg} Autismgreen
Moderator {public msg} Denise I will add you also
Autismgreen {public msg} Are you currently using any biomedical interventions? i.e. diet, supplements etc. Thank you,
Denise in mn {public msg} "?"
Mommyo {public msg} Thanks Steven I let others ask their questions
Tabv {public msg} moderator will cue each person as their name comes up :) Thank you!
Stephen Shore {public msg} I am not using any biomedical interventions. However, there are certainly enough children that DO NEED biomedical intervention so it must be considered as a possible intervention
Moderator {public msg} Jvjgmom you are next
Rebecca {enters}
Jvjgmom {public msg} How do you know when your child is ready to begin teaching a musical instrument like piano? What are the signs of readiness besides an overwhelming love of music and interest in it?
Stephen Shore {public msg} Jvjgmom
Stephen Shore {public msg} When a child is able to read letters of the alphabet and has enough motor control to play a keyboard with one finger and/or play a recorder.
Stephen Shore {public msg} Additionally, music is one way to learn at least the first 7 letters of the alphabet
Jvjgmom {public msg} thank you
Moderator {public msg} Ron you have a question
Ron {public msg} When you see a 10 year old nonverbal child with autism, who appears to not pay attention when talked to, do you feel you know what is going on in his or her mind? Can you relate to these kids who are considered "more severe"?
Stephen Shore {public msg} usually I start on the recorder or piano. In additional to all the therapeutic benefits of music, music also does the following important things.
Stephen Shore {public msg} 1. provides that child with something they can be good at.
Stephen Shore {public msg} 2. is a good leisure time activity. It is often hard for children on the spectrum to deal with unstructured time. Practicing an instrument gives them something constructive to do
Stephen Shore {public msg} 3. a way to build relationships and get involved in the community. It is very
common to take an instrument and join a community band or orchestra
Stephen Shore {public msg} done. now Ron's question.
Moderator {public msg} lol
Ron {public msg} Re kids or adults who are considered severe, do you feel you know what their feeling based on your background? are you able to perceive things with them that maybe their parents miss?
Ron {public msg} asked in another way
Moodswng {public msg} great question Ron
Ron {public msg} Thanks, I always wonder about my own son.
Stephen Shore {public msg} Often, but not always I can sense what is going on in a non-verbal child's mind. One of the children I teach is nonverbal.... but he has learned how to play the recorder very well and he reads music
Jvjgmom {public msg} ?
Unowho {enters}
Stephen Shore {public msg} Ron's second question: Yes, I think my background does help in understanding people with communication challenges. I do perceive things the parents may miss. It's also important to know that parents often perceive things that I miss. Parents are the experts.
Ron {public msg} thank you, Stephen
Stephen Shore {public msg} experts on their own children. That expertise should be used when working with children on the autism spectrum
Moderator {public msg} l_newland you have a question
Stephen Shore {public msg} you are welcome
Moderator {public msg} Denise?
Stephen Shore {public msg} awaiting Denise's question
Moderator {public msg} must be a very important one Stephen
Stephen Shore {public msg} OK
Moderator {public msg} well we will come back to Denise.
Jvjgmom you have another question?
Ron {public msg} maybe Denise had to run to help her child.
Jvjgmom {public msg} Did you have sensory integration issues? If so, can you explain what that is like? For instance, my son is constantly moving and needing propriceptive input all the time. He literally bounces off of the furniture. I want to know what it's like for him.
Neenee {public msg} ?
Moodswng {public msg} If I may join the questions please let me know.
Stephen Shore {public msg} I did and still do have issues with sensory integration.
Stephen Shore {public msg} Your son may be HYPO-sensitive in the areas of vestibular and proprioceptive.
That makes it hard for him to know where his body is in relation to the environment.
Moderator {public msg} mood thats ok I will let you know when it is your turn.
Unowho {public msg} ?
Stephen Shore {public msg} Thus, to get back in touch with the environment he needs big body input.... such as crashing into furniture, deep pressure, and amusement park rides.
Jvjgmom {public msg} Yes, I am aware of that. We do SI therapy with him.
Autismgreen {public msg} ?
Stephen Shore {public msg} SI issues result in sensory data being either too much or too little... and often distorted. This results in People with SI dysfunction depending on unreliable data from the senses.
Jvjgmom {public msg} It's never enough. He is in constant movement and repeats phrases from shows to himself all the time.
Stephen Shore {public msg} which makes novel situations very scary.
Stephen Shore {public msg} and increases the need for familiarity and repetition.
Stephen Shore {public msg} done
Jvjgmom {public msg} What is it like to have those feelings all the time? It must make you very anxious.
Stephen Shore {public msg} I think that is a leading cause of anxiety in people on the autism spectrum. The environment is very unpredictable.
Stephen Shore {public msg} and it's really hard to deal with new data effectively.
Jvjgmom {public msg} thank you Stephen.
Stephen Shore {public msg} next.
Moderator {public msg} Neenee you have a question.
Stephen Shore {public msg} You are welcome.
Neenee {public msg} What are your general recommendations for a classroom setting (pre-k/knd.) of typical peers with one mild/moderate autistic child?
Stephen Shore {public msg} There is such diversity in the autism spectrum so it's hard to make specific recommendations without more information. However, there are some things to look for.
Jvjgmom {leaves}
Stephen Shore {public msg} 1. Teachers who are willing to work with a child on the autism spectrum.
Stephen Shore {public msg} 2. A place to take a sensory break if needed.
Stephen Shore {public msg} 3. A good teacher to student ratio.
Ron {public msg} ?
Stephen Shore {public msg} 4. As quiet a classroom as possible.
Stephen Shore {public msg} That is where I would start.
Neenee {public msg} thanks.
Stephen Shore {public msg} Done.
Tallyashe {public msg} ?
Moderator {public msg} Moodswng you have a question.
yesroh {public msg} Hi Stephen.
Moodswng {public msg} Stephen I have a ten year old moderately autistic nonverbal child I would do anything to help him cultivate an interest in something but he does not appear interested in anything. Do you have any suggestions how I could help him to build his self esteem
Moodswng {public msg} and find out what he is good at.
Stephen Shore {public msg} I would see what he likes to do when he doesn't have to do anything.
Stephen Shore {public msg} He might like to play with trains, watch a particular show on TV, something else? From there I would begin to make a relationship with him
Moodswng {public msg} he kind of just goes about his merry way.
Moodswng {public msg} happily stimming.
Stephen Shore {public msg} Is there anything in particular that he likes?
Moodswng {public msg} he likes to jump and climb.
Moodswng {public msg} his dad is a great guitar player we bought him a guitar but his interest is NEVER held on one thing for more than a minute or two.
Stephen Shore {public msg} I would start jumping and climbing with him.
Moodswng {public msg} he has a trampoline and we jump together.
Stephen Shore {public msg} It's hard to say exactly what to do without observing him and finding something to latch on to.
Moodswng {public msg} weather is getting cold now.
Stephen Shore {public msg} THat's good mood :)
Stephen Shore {public msg} next question
Moderator {public msg} unowho has a question
Moodswng {public msg} jumping days are coming to an end for a while
Unowho {public msg} is it possible to diagnose or suspect autism or something similar on yourself?
Stephen Shore {public msg} As an added aside.... Due to time constraints I may not get to your question or answer it as completly as you need. So feel free to continue with an e-mail at a later date.
Stephen Shore {public msg} It is possible to determine that oneself has autistic tendencies and may even be on the spectrum. I know several people who have done that. However, if this is the case it's good to get an official DX from a qualified professional because that is the key to needed services.
Unowho {public msg} can a general doctor help me with my questions ?
Stephen Shore {public msg} a general doctor can help with some questions but for more details information and a DX you will want to see a specialist in the field such as an MD, PsyD., or psychiatrist.
Stephen Shore {public msg} In some states, I think (but not sure) that an MSW may be able to give a dx.
Unowho {public msg} ok thnx
Moderator {public msg} autismgreen you are next
Autismgreen {public msg} I know an adult with Autism seems HFA in the area. He recently spoke at our support group meeting. He is quite alone and I think depressed. What kind of supports do you recommend for an adult that I can help him find? Thank you.
Stephen Shore {public msg} Adults on the spectrum need to find our autistic adult community. Refer him to the Asperger Association of New England (www.aane.org) website for links to online mailing list and chat communities
Stephen Shore {public msg} Additionally, going to conferences where there are others on the spectrum for him to interact with is very good.
Autismgreen {public msg} He does not use the computer. I will have to print things for him.
Stephen Shore {public msg} Two such conferences are the ASA national conference and the conference put on by www.maapservices.org
Stephen Shore {public msg} There are others too but those two come to mind. Done
Moderator {public msg} tallyashe you have a question
Tallyashe {public msg} Stephen, I have a 6 year old high functioning autistic child, who was non verbal until almost 3 1/2, He is verbal now, but still has pragmatic issues. He's in an inclusion setting. Our problem is that when he's in school, he as great structure thanks to a good teacher. He does well, although he has to hurry, hurry, hurry with everything. At home is completely different. It's hard to be structured, we have 4 other children. He tends to be completely out of control, easily frustrated and upset. How can we work to provide him structure at home? What activities other than working with his states (he perseverant on states and capitals... knows them all) would you suggest? That's what calms him down now.
Stephen Shore {public msg} OK. Start with that.... printing it out for him.
Tallyashe {public msg} he has a map and flash cards
Tallyashe {public msg} but I worry about letting him perseverant on them.
Stephen Shore {public msg} You may want to see if you can hire a college student from a local education or psych department at a college.
Tallyashe {public msg} oh that's a great thought... we have 2 colleges too.
Stephen Shore {public msg} to help with building structure at home. Additionally, sometimes children do all they can to "hold it together at school" and then let loose at home where it is safe for them to do so.
Stephen Shore {public msg} Your child may not be doing that but a number of children do so that point is worth considering.
Tallyashe {public msg} I think that is a real possibility.
Tallyashe {public msg} so is that something we just have to work with?
Stephen Shore {public msg} Hi Thomas. Good to see you.
Stephen Shore {public msg} next
Moderator {public msg} ron you have the last question
Ron {public msg} My son, 10 year nonverbal, does not like sports, and I've somewhat stopped trying to coax him that way. Ok or should I push him? He does love surfing the internet but only for select characters he loves (too much, most of the time). Suggestions to help him open up to more possibilities using the internet?
Stephen Shore {public msg} Is there anything else he like to look up on the internet? That might help him branch out.
Ron {public msg} he starts with google...
Ron {public msg} puts in words like music notes, Thomas the tank engine, barney
Stephen Shore {public msg} then?
Ron {public msg} finds some great video clips at times
Ron {public msg} and browses ebay frequently for these same items
Stephen Shore {public msg} What about getting him to use e-mail to type about these things. That will give him another way to communicate.
Ron {public msg} thank God he doesn't know how to use my credit card ;)
Stephen Shore {public msg} LOL
Ron {public msg} we haven't found that way to get to him
Ron {public msg} although he will spell out words he cannot enunciate.
Ron {public msg} he doesn't care that there is someone to write an email to, I guess.
Stephen Shore {public msg} Even if the e-mail is one or two misspells words that's fine. That is how he could ask you for something.
Ron {public msg} yeah, he's ok with asking us for stuff off line.
Stephen Shore {public msg} The challenge is find a why to build incentive to write that e-mail.
Ron {public msg} on the computer, he's currently only interested in those activities I mentioned.
Stephen Shore {public msg} How does he ask?
Ron {public msg} I hear you, you're right.
Ron {public msg} no, he motions to use my computer at times, is about all the progress we made. Asks permission in his own way
Stephen Shore {public msg} I see.
Ron {public msg} I’ll write you offline about it. Thank you Stephen
Moderator {public msg} We wish to thank you all for coming, and to our Host Stephen. We hope to have you all back in a month.
Yesroh {public msg} Thanks Stephen
Ron {public msg} Stephen... you were great. Thanks for all the insights.
Stephen Shore {public msg} I'd try find a way for him to ask to use the computer at a later time via e-mail... given that he has the concept of doing something at a specific time in the future.
Rebecca {public msg} Thanks Stephen ;)
Ron {public msg} Another Spec. chat on Dec. 8th with Shelley Reynolds talking about the UA Power of 1.5 conference in Wash DC
Stephen Shore {public msg} You are welcome. Check my website at www.autismasperger.info for more information.
Stephen Shore {public msg} I also have my presentation schedule there and may be giving a talk near you next year
Moderator {public msg} Stephen, keep up the great work!
Stephen Shore {public msg} You are welcome. It was a pleasure to be here. Good questions were asked
Ron {public msg} Thank you Stephen, and thank you moderator(s). Great job! This transcript will be archived in a few weeks for those who came late, or for those who couldn't be on tonight.
Rebecca {public msg} All the chats are in EST time zone. Please note that for the next chat. :)
Stephen Shore {public msg} You are welcome.
Ron {public msg} Thomas - hope you can make it back, write us at admín@talkautism.org if we can forward your questions
Ron {public msg} Good night!
Rebecca {public msg} Night all!
Stephen Shore {public msg} Night!
Moderator {public msg} Please be aware that this room is open at all times for anyone that would like to just hook up and chat with another parent
Moderator That is, unless Ron is having a wonderful chat like tonight.
Rebecca {public msg} Thank you ALL for coming! Please feel free to drop by anytime! Chat is open 24/7.
