Take This Opportunity To Speak Out Regarding Services We Want

My friend and colleague, Pam Wiley Ph.D. CCC-SLP  is working on all of our behalf to help our kids get the services they need and she wants your input. Please take a few moments to help Dr. Wiley help us, by completing the brief questionnaire below. 

Thanks,

Donna 

Parent Survey: ASD Services Over Age 21

Dear Parent,

My name is Dr. Pamela Wiley and I am licensed speech-language pathologist and Fellow of the American Speech-Language-Hearing Association. I am conducting a research study to get the opinion of parents of young adult children with autism spectrum disorders (ASD) regarding specific services available and needed after age 21.  Your opinion is important to me and I would like your input as we expand upon existing services and develop new programs to serve your young adults with ASD.

Included in this email is a link to Survey Monkey.  There you will find a survey that can be completed in ten minutes or less. All of your responses are anonymous and confidential and we will not be able to tie your responses to you. Your participation is completely voluntary and data will be kept for three years past the life of the study. 

Should you wish to withdraw from this study, you may do so at any time with no penalty to you and your answers will not be sent to us by Survey Monkey. There are no anticipated risks expected as a result of participation in this study. However, we would greatly appreciate it if you would agree to respond to the survey.

The initial results of this survey will be professionally presented at the American Speech-Language-Hearing Association national conference.

Clicking on the link below provides your consent to participate in the survey and gives us permission to use your responses for our research study. 

Please complete by October 30, 2015. Thank you for your time.

https://www.surveymonkey.com/r/youngadultsASD

Sincerely,

Pamela Wiley, Ph.D. CCC-SLP

ASHA Fellow

Technology and Speech, a Perfect Marriage!

This is amazing and so exciting to see. I love supporting great folks, doing great things. Maria Johnson a great speech path - who we loved working with - left Los Angeles to work with the University of Texas. She recently sent me this video of the Virtual Reality work they are doing for people on the Spectrum. So exciteing, had to share :)  

https://www.youtube.com/watch?v=6U87iTyLW90#action=share

Spread the Word! The research and results that we are showing are astounding!

view YouTube video Virtual Reality at the Center for BrainHealth

News Alert: New Service Provider in the Valley

So many of you read the What's Working; Celebrating Vocational Programs that I posted on the Los Angeles Speech and Language Center, I wanted to let you guys know they are opening an office in the Valley. They will be providing services for our older boys, including vocational programs. Seems they are also going to provide transportation from their valley location to their Culver City campus over school breaks, when they do camp/daycare programs.  I'm really excited to have a new option in the valley that includes bigger kids - I'll keep you posted..(LOL).  Here's a flyer I picked up yesterday on their upcoming open house. 

NEWS ALERT: UNITED HEALTHCARE AGREES TO COVER MEMBERS' SPEECH THERAPY SERVICES.

This great news just in from Dr. Lou Vismara in the CA. State Capitol. Thanks Lou!!

United Healthcare announced that it has reached an agreement with the California Department of Managed Health Care to stop denying coverage of speech therapy services to its members.  

Similar Settlement With Kaiser Permanente Foundation Health Plan. In 2012, DMHC reached a similar settlement with Kaiser Permanente Foundation Health Plan.  Since 2009, DMHC had received complaints from more than 100 Kaiser policy-holders who were denied coverage for the therapies because they lack a physical or mental health condition, according to agency documents.  Under the settlement, Kaiser agreed to cover medically necessary physical, occupational and speech therapy services and reimburse members who paid for such services out-of-pocket since January 2009. Details of New Agreement According to the agreement between DMHC and United Healthcare, the insurer will:

·    Provide coverage for medically necessary speech therapy services, as required by state law;

·    Reimburse members who paid out-of-pocket for such services in recent years; and

·    Revise all current health plan documents to reflect the changes.

The agreement went into effect Friday, and the state did not impose a financial penalty on the insurer.   UHC is required to notify all affected members of the change within 60 days and to notify all of its membership of the agreement in its November newsletter. Members have until July 30, 2014, to file for reimbursements. Reaction: DMHC Director Brent Barnhart said the agreement "ensures UHC enrollees needing speech therapy will receive the care to which they are entitled under the law.    "In a statement, UHC said that its original policy "was appropriate" but that the agreement was reached "to resolve this old issue"  For more information on the on how to obtain reimbursement for services, contact UHC’s Customer Service department at 1-800-624-8822.  The agreement is available at:  http://www.dmhc.ca.gov/library/reports/news/uhca.pdf. 

Language in Children with Severe Delay & ASD Emerges Faster Than We Thought

Speech Emerges in Children On the Autism Spectrum With Severe Language Delay at Greater Rate Than Previously Thought

New findings published in Pediatrics by the Kennedy Krieger Institute's Center for Autism and Related Disorders reveal that 70 percent of children with autism spectrum disorders (ASD) who have a history of severe language delay, achieved phrase or fluent speech by age eight. This suggests that more children presenting with ASD and severe language delay at age four can be expected to make notable language gains than was previously thought. Abnormalities in communication and language are a defining feature of ASD, yet prior research into the factors predicting the age and quality of speech attainment has been limited.

"We found that nonverbal intelligence was the strongest predictor of phrase speech, while social interest and engagement were as robust, if not greater, when predicting the age that children attained phrase speech and fluent speech," said Ericka L. Wodka, Ph.D., a neuropsychologist in Kennedy Krieger's Center for Autism and Related Disorders and lead study author. "Children with typical nonverbal intelligence attained language almost six months ahead of those with scores below the average."The study used the largest sample to date to examine the relationship between key deficits associated with ASD and attainment of phrase and/or fluent speech following a severe language delay, characterized by a child not putting words together into meaningful phrases by age four. As a common milestone of speech development, phrase speech is defined as using non-echoed three-word utterances that sometimes involve a verb and are spontaneous meaningful word combinations; whereas fluent speech is defined as the ability to use complex utterances to talk about topics outside of the immediate physical context.

These findings reinforce that core abilities, such as nonverbal intelligence and social engagement, have a greater influence on the development of communication than other behaviors associated with ASD, such as repetitive and abnormal sensory behaviors. "Our findings continue to support the importance of considering both nonverbal intellectual level and social communication in treatment planning, highlighting the differing impact of these factors as related to treatment goals," said Dr. Wodka.

Data for this retrospective study were from the Simon Simplex Collection (SSC), a unique multi-site database project that gathers biological and phenotypic data on children with ASD aged four- to eighteen-years-old without a previous genetic history of ASD. The database establishes a permanent repository of genetic samples from 2,700 families, each of which has one child affected with an ASD and unaffected parents and siblings.

From the SSC, a total of 535 children, ages eight years or older, were studied. Using the Autism Diagnostic Interview-Revised (ADI-R), a standard parent-interview that distinguishes children with ASD from non-ASD populations, and the Autism Diagnosis Observation Schedule (ADOS), a clinician-administered observation that assesses social, communicative and stereotyped behaviors, researchers selected children because they either had no phrase speech at their time of enrollment in the SSC or their phrase speech onset occurred after age four. Based on ADI-R results and their language presentation, children in this study were administered one of four evaluation modules -- no words or single words (Module 1), phrase speech (Module 2) or fluent speech (Module 3 or 4). Of the 535 participants in the study, 119 children mastered phrase speech and 253 children were speaking fluently by their eighth birthday, while 163 children never attained phrase or fluent speech

"We hope the results of this study empower parents of children with autism and severe language delays to know that, with the appropriate therapy, a child will likely make significant gains in this area over time; however, progress should be expected to be slower for those children with lower intellectual abilities," said Dr. Wodka. "Additionally, we hope these findings provide clinicians with better defined therapeutic targets for their patients with autism."

Future longitudinal studies, including both simplex and multiplex families, are required to fully capture the prevalence and predictors of language development in children with ASD. Additionally, further research into the impact of social cognition strategies (e.g., perspective taking) on the development of language, as well as the relationship among specific social deficits and fluent speech development, may hold important implications to the design of intervention.

What is Autism?

What is Autism?

Yesterdays post “What is Asperger’s Syndrome?” Triggered a lot of emails from people wanting to know “What exactly is autism?”.  Thanks to all of you who stepped up to ask! For those of you who have no idea or are just not quite sure, here’s a definition.  I have to say as a mom of a child with autism, this is a definition and gives you facts, which are good. What it won’t do is help people to grasp how unique each child with autism is, and what it really looks like.  I can’t show you that for every family but I can show you some. To better understand, you need to see what autism looks like. If you want to see what autism looks like up close and personal visit: http://www.youtube.com/user/AutismDayByDay?feature=watch.  Pick a topic and take a peek.

What is Autism? What Causes Autism?

This definition from: http://www.medicalnewstoday.com

Autism is known as a complex developmental disability. Experts believe that Autism presents itself during the first three years of a person's life. The condition is the result of a neurological disorder that has an effect on normal brain function, affecting development of the person's communication and social interaction skills.

People with autism have issues with non-verbal communication, a wide range of social interactions, and activities that include an element of play and/or banter.

What is ASD?

ASD stands for Autism Spectrum Disorder and can sometimes be referred to as Autistic Spectrum Disorder. In this text Autism and ASD mean the same. ASDs are any developmental disabilities that have been caused by a brain abnormality. A person with an ASD typically has difficulty with social and communication skills.

A person with ASD will typically also prefer to stick to a set of behaviors and will resist any major (and many minor) changes to daily activities. Several relatives and friends of people with ASDs have commented that if the person knows a change is coming in advance, and has time to prepare for it; the resistance to the change is either gone completely or is much lower.

Autism is a wide-spectrum disorder

Autism (or ASD) is a wide-spectrum disorder. This means that no two people with autism will have exactly the same symptoms. As well as experiencing varying combinations of symptoms, some people will have mild symptoms while others will have severe ones. Below is a list of the most commonly found characteristics identified among people with an ASD.

Social skills

The way in which a person with an ASD interacts with another individual is quite different compared to how the rest of the population behaves. If the symptoms are not severe, the person with ASD may seem socially clumsy, sometimes offensive in his/her comments, or out of synch with everyone else. If the symptoms are more severe, the person may seem not to be interested in other people at all.

It is common for relatives, friends and people who interact with someone with an ASD to comment that the ASD sufferer makes very little eye contact. However, as health care professionals, teachers and others are improving their ability to detect signs of autism at an earlier age than before, eye contact among people with autism is improving. In many cases, if the symptoms are not severe, the person can be taught that eye contact is important for most people and he/she will remember to look people in the eye.

A person with autism may often miss the cues we give each other when we want to catch somebody's attention. The person with ASD might not know that somebody is trying to talk to them. They may also be very interested in talking to a particular person or group of people, but does not have the same skills as others to become fully involved. To put it more simply, they lack the necessary playing and talking skills.

Empathy - Understanding and being aware of the feelings of others

A person with autism will find it much harder to understand the feelings of other people. His/her ability to instinctively empathize with others is much weaker than other people's. However, if they are frequently reminded of this, the ability to take other people's feelings into account improves tremendously. In some cases - as a result of frequent practice - empathy does improve, and some of it becomes natural rather than intellectual. Even so, empathy never comes as naturally for a person with autism as it does to others.

Having a conversation with a person with autism may feel very much like a one-way trip. The person with ASD might give the impression that he is talking at people, rather than with or to them. He may love a theme, and talk about it a lot. However, there will be much less exchanging of ideas, thoughts, and feelings than there might be in a conversation with a person who does not have autism.

Almost everybody on this planet prefers to talk about himself/herself more than other people; it is human nature. The person with autism will usually do so even more.

Physical contact

A number of children with an ASD do not like cuddling or being touched like other children do. It is wrong to say that all children with autism are like that. Many will hug a relative - usually the mother, father, grandmother, grandfather, teacher, and or sibling(s) - and enjoy it greatly. Often it is a question of practice and anticipating that physical contact is going to happen. For example, if a child suddenly tickles another child's feet, he will most likely giggle and become excited and happy. If that child were to tickle the feet of a child with autism, without that child anticipating the contact, the result might be completely different.

Loud noises, some smells, and lights

A person with autism usually finds sudden loud noises unpleasant and quite shocking. The same can happen with some smells and sudden changes in the intensity of lighting and ambient temperature. Many believe it is not so much the actual noise, smell or light, but rather the surprise, and not being able to prepare for it - similar to the response to surprising physical contact. If the person with autism knows something is going to happen, he can cope with it much better. Even knowing that something 'might' happen, and being reminded of it, helps a lot.

Speech

The higher the severity of the autism, the more affected are a person's speaking skills. Many children with an ASD do not speak at all. People with autism will often repeat words or phrases they hear - an event called echolalia.

The speech of a person with ASD may sound much more formal and woody, compared to other people's speech. Teenagers with Asperger's Syndrome can sometimes sound like young professors. Their intonation may sound flat.

Repetitive behaviors

A person with autism likes predictability. Routine is his/her best friend. Going through the motions again and again is very much part of his/her life. To others, these repetitive behaviors may seem like bizarre rites. The repetitive behavior could be a simple hop-skip-jump from one end of the room to the other, repeated again and again for one, five, or ten minutes - or even longer. Another could be drawing the same picture again and again, page after page.

People without autism are much more adaptable to changes in procedure. A child without autism may be quite happy to first have a bath, then brush his teeth, and then put on his pajamas before going to bed - even though he usually brushes his teeth first. For a child with autism this change, bath first and then teeth, could completely put him/her out, and they may become very upset. Some people believe that helping a child with autism learn how to cope better with change is a good thing, however, forcing them to accept change like others do could adversely affect their quality of life.

A child with autism develops differently

While a child without autism will develop in many areas at a relatively harmonious rate, this may not be the case for a child with autism. His/her cognitive skills may develop fast, while their social and language skills trail behind. On the other hand, his/her language skills may develop rapidly while their motor skills don't. They may not be able to catch a ball as well as the other children, but could have a much larger vocabulary. Nonetheless, the social skills of a person with autism will not develop at the same pace as other people's.

Learning may be unpredictable

How quickly a child with autism learns things can be unpredictable. They may learn something much faster than other children, such as how to read long words, only to forget them completely later on. They may learn how to do something the hard way before they learn how to do it the easy way.

Physical tics and stimming

It is not uncommon for people with autism to have tics. These are usually physical movements that can be jerky. Some tics can be quite complicated and can go on for a very long time. A number of people with autism are able to control when they happen, others are not. People with ASD who do have tics often say that they have to be expressed, otherwise the urge does not stop. For many, going through the tics is enjoyable, and they have a preferred spot where they do them - usually somewhere private and spacious. When parents first see these tics, especially the convoluted ones, they may experience shock and worry.

Obsessions

People with autism often have obsessions.

Myths about autism

A person with autism feels love, happiness, sadness and pain just like everyone else. Just because some of them may not express their feelings in the same way others do, does not mean at all that they do not have feelings - THEY DO!! It is crucial that the Myth - Autistic people have no feelings - is destroyed. The myth is a result of ignorance, not some conspiracy. Therefore, it is important that you educate people who carry this myth in a helpful and informative way.

Not all people with autism have an incredible gift or savantism for numbers or music. People with autism are ordinary people... with autism.

Autism news Medical News Today is a leading resource for the latest headlines on autism. 

iPad, Apps, Autism, Holidays...Am I the only one confused?!

I’ve read and seen so much about iPad & tablet “Apps” helping our kids learn and communicate.  I don't want my kiddo to miss out, but I've hesitated because he's a computer obsessed kid. I have to be sure how we are going to use it, when he will use it and where. If I don’t, I could just add one more obsession to his list, one more thing for him to perseverate on and risk missing out on the  benefits. 

My first step: to learn about the apps available.  I found two resources – so far –  that give the most info in one place, both links are below.  I found a book on Amazon (that’s inexpensive) called Apps for Autism that lists more than 200 apps and how they work and Autism Speaks has listed app’s. 

Amazon.com: Customer Discussions: Apps for Autism: An Essential ...

www.amazon.com/Apps-Autism-Essential-Effective-Communication/...

Apps for Autism: An Essential Guide to Over 200 Effective Apps for Improving Communication, Behavior, Social Skills, and More! forum ...

http://www.autismspeaks.org/family-services/resource-library/autism-apps

Next I’m going to look into tablets. Does it have to be an iPad? Will the new $199.00 Amazon Tablet do the trick? What about the new iPad scheduled to come out early next year that’s supposed to be less expensive?  What are the factors that determine what pad is best?  If anyone already knows the answers to these questions pls  email me (autismdaybyday@gmail.com) and I’ll post your information. 

Prompts and Circumstance Part II - Language Processing vs Questions & Social Greetings

 Nicky is 13 and his language processing is so bad he still confuses "How are you?" with "How old are you?".  On the good side we have learned his strengths and we keep finding ways to use them to help Nicky expand and grow. Here's our latest team effort to help him with greeting and questions.  We begin tomorrow.  If you want to try it...please cut and paste away!

News Alert: Strategies for Reducing Repetitive Questions from Individuals with Autism

Strategies for Reducing Repetitive Questions from Individuals with Autism

Family members and professionals are often puzzled about what to do when an individual begins to ask repetitive questions. Like most things that involve individuals across the autism spectrum, the answer is not simple and clear cut. Instead, it is dependent on the circumstances surrounding the usage of the repetitive questions.

Repetitive questions may serve a variety of functions for the person with autism, Aspergers, or other pervasive developmental disorder. What is confusing is that the same question may serve different functions at different times thereby requiring different strategies. The ability to "read" a situation may depend on the communication partner's familiarity with the person with autism and what he or she knows about that person's social and repetitive behaviors. Strategy selection is based on correctly guessing the function or real purpose of the person's repetitive question. This article lists both long-term and short-term strategies that emanate from the communicative purposes of repetitive questions. Remember, which strategy one chooses will depend on the function of the individual's question.

Possible Functions or Reasons for Repetitive Questioning

Inability or difficulty adequately communicating ideas via oral speech.

Difficulty knowing how to initiate or maintain a conversation.

Lack of other strategies for gaining attention in a positive way.

Need for information.

Need for reassurance.

Need to escape a situation that is boring or unpleasant.

Need to avoid transitioning to a new situation.

Desire to be social.

Need to be in control of the situation and/or attempt to keep the social interaction within his/her level of understanding.

Fascination with predictable answers.

Desire to demonstrate knowledge or competency by content of questions.

A motor planning problem which makes novel utterances more difficult to produce in affective situation.

Possible Strategies to Teach Adaptive SkillsLong-Term Strategies

• Introduce an augmentative means of communication that may be more efficient either as a primary or backup system. Options include backup communication boards or card sets.
• Use a scripted format to introduce better conversational strategies; practice varying scripts and situations.
• Use a topic notebook to suggest other subjects to discuss with various people.
• Provide visual information that may reduce anxiety (e.g., schedule boards, activity charts).
• If questioning reflects task avoidance, analyze the environment and the person's schedule and change accordingly.
• Provide positive alternative situations for the person with autism spectrum disorder to use his special knowledge. For someone with extensive knowledge about cars, help him develop a book that could be shown to other people.

Short-Term Strategies

• Redirect the person to augmentative communication materials or topic notebook in order to assist himself with initiation or topic shift.
• Remind the person, using a visual or verbal cue, of what has been learned in scripted practice that would apply to this situation.
• Set a limit on the number of repetitive questions or the amount of time for the interaction and share this information with the person with autism spectrum disorder. Let the person know when you will be free to talk on a different topic and have it built into his/her schedule.
• Reverse the question to see if the person already knows the answer to his/her own question.
• Suggest an alternative activity so the opportunity for interaction is maintained but the focus shifts from the attempt at conversation to something of mutual interest and less stress.
• Use a checklist so that if the questions reflect anxiety about his/her schedule, the person with autism can independently check off events until the target activity occurs. i.e. get in van at 6:30, drive for 30 minutes to shopping mall or buy CD
• Write the answer on paper as the question is answered the first time. Redirect back to the message on the paper if the question is repeated and the assumed function of seeking information is the same.
• Tell the person with autism spectrum disorder that you already told him this information (i.e., responses to his questions) but you would be willing to discuss topics A, B, or C and let him/her choose.

Contributed by Beverly Vicker
Indiana Resource Center for Autism

References
Vicker, B. (2000). Long and short term strategies for reducing specific repetitive questions. The Reporter, 6(1), 28-29.

A Conversation Shocker!!!

Nicky has serious deficits in language processing and at 12, he's made a lot of progress with language, but he still doesn't have conversations outside of his interest, needs and wants without great support.  But none of us ever stops asking him questions; even if they go unanswered, or need a prompt. It's just what we do, and for me it's become auto pilot.  So much so, that when Nicky ran in the house from school yesterday, super happy to see me and said  "Hi Mother" and I began blurting out the same questions about his day, that I ask every single day.  It wasn't until I had gotten the 5th perfect response, to my 6 questions in rapid fire succession, that I realized Nicky and I just had a conversation!   A CONVERSATION   Nicky answered five questions about his day, without a prompt, without  a reinforcer,  without me body blocking him from running away.  I just asked, and he just answered!!!!!!!!!!!!!!!!!!!!!  AMAZING!!!!!  This is good, I'm going for 8!!!

Video: Mom Pulling Language & Working On Waiting

Nicky lives on what I call our "In Home Torture Program" where nothing is free not even his "Freetime" !. Everything's earned and it's a life of first this and then that.  :)   All day we use his favorite things as leverage to teach skills and reduce negative behaviors and he's come SO FAR!!!  He's doing so much in these short clips; he's waiting, keeping his body calm, accepting re direction,  following my multiple directions and he's responding to my conversational questions all things he COULD NOT and/or WOULD NOT be doing if not for all the early intervention strategies.  I remember when he would get so frustrated he could only wait a minute and then he would melt down. Now he know's it's all about "I give" and "I get". 

Whats happening in the video: 

Nicky loves the computer and looking at pictures on the computer is a BIG favorite. He really wants the computer and I've told him he can have it in a few minutes, BUT first he needs to answer my questions and talk to me while keeping his body calm and waiting. 

Watch the video's here or use the link:

http://www.youtube.com/user/AutismDayByDay?feature=mhum