The Spectrum by Advocates For Autism, Inc.

Driving with Autism

Fri, 30 Aug 2024 12:42:32 GMT

Navigating the Road to Independence:

For many individuals, obtaining a driver’s license is a significant milestone that symbolizes independence and freedom. However, for those diagnosed with autism spectrum disorder (ASD), the journey to becoming a licensed driver can present unique challenges and opportunities. In this blog, we will explore the experiences, challenges, and strategies for driving with autism.

Understanding the Challenges

Driving requires a combination of motor skills, executive functioning, and the ability to process and respond to various stimuli. Individuals with autism may face specific challenges in these areas, including:

Concentration and Multitasking: Autistic drivers may find it difficult to concentrate on their own driving while simultaneously paying attention to other drivers on the road.
Slower Hazard Detection: Research suggests that autistic individuals may have slower detection times for road hazards.
Distraction and Rule-Bound Behavior: Being easily distracted and becoming too bound by rules can impact driving performance.
Social Cues and Anxiety: Difficulty identifying social cues, such as tailgating, and nervousness related to comorbidities like ADHD or anxiety can also pose challenges.
Embracing the Strengths

Despite these challenges, autistic individuals possess unique strengths that can make them excellent drivers. These strengths include:

Adherence to Rules: Autistic drivers often have a strong desire to strictly adhere to driving rules and traffic regulations.
Attention to Detail: Paying closer attention to their overall driving environment and remembering details for long periods can enhance driving safety.
Limited Risk-Taking: Autistic drivers are less likely to engage in risky behaviors such as speeding.

Tips for Successful Driving:

With the right preparation and support, individuals with autism can become confident and capable drivers. Here are some tips to help navigate the road to independence:

Practice and Repetition: Engage in both parent-supervised and formal driving instructor-led lessons to build confidence and skills.
Break Down Skills: Divide each driving skill into small, manageable parts and use repetition to reinforce learning.
Use Visual Aids: Consider using written, verbal, or visual scripts before each drive to help commit the steps to memory.
Gradual Exposure: Start with familiar routes and gradually introduce different types of weather and nighttime driving.
Seek Professional Support: Consult with occupational therapists or driving rehabilitation specialists who have experience working with individuals with neurodevelopmental differences.

The Benefits of Driving:

Driving can be a life-changing experience for individuals with autism. It can increase independence, boost self-esteem, and expand social circles. Additionally, driving opens up opportunities for employment, access to community activities, and the development of social relationships.

Conclusion:

While the journey to obtaining a driver’s license may be longer and more complex for individuals with autism, it is certainly achievable with the right support and preparation. By embracing their strengths and addressing their challenges, autistic individuals can confidently navigate the road to independence and enjoy the many benefits that come with driving.

For more information: https://www.milavetzlaw.com/driving-with-a-disability-guide/

Life Planning for Your Adult Child

Tue, 30 Apr 2024 23:00:00 GMT

Exclusive, new service provided by Advocates For Autism, Inc.

Look up the word adulting in the Urban Dictionary and you will find "Adulting - Verb - requires action to do grown-up things and hold responsibilities such as a 9-5 job, a mortgage or rent, a car payment, or anything else that makes one think of grown-ups. But what does this look like for an adult child with autism? Are you ready for that phase of their lives? Perhaps it has arrived and you still have not completed their full future plans for Money, Job, Housing, Friends, Transportation, Food, Safety, and yes, even their final resting place. You won't be here to do that part, so ALL of it needs to be planned out. What an overwhelming task to do!! We can help you. We will write a roadmap for you to follow, step-by-step, not expensive either. If you have Self-Directed Services in NY and your child is over 18, contact us and through that plan, our services can be covered.

With our support as parents, our children can learn how to complete tasks that we can build into their routines. In the meantime, the parent must be diligently setting up the future for their child. All with our continued support. We at Advocates For Autism have examples of our own children who are now adults, to be considered by many to be successes. They work a little, have a few friends, and even have their own houses. But above all they are well-liked in the community. Isn't that all we wanted for our kids? But someone along the way they started to fade from us as the autism took over like a veil. It covered everything and it was everywhere, and we spent our time, all of our time, getting through the best we could. Now they are adults and now this is the final push that counts. It will take work, but we can get you through.

Adulting 101 Checklists For Those With ASD

Sun, 28 Apr 2024 13:51:15 GMT

See our Series of Checklists!

Independent Living Skills Checklist

Using appliances and tools
Kitchen, bathroom, furnaces, air conditioners, garages
Maintaining house and grounds
Replacing light bulbs, power outages, cleaning chores
Pet care and maintenance
Fitness/wellness/nutrition
Behavior at the gym, use of machines, menu planning, choices in restaurants, medicines taken for colds, use of over-the-counter meds.
Appropriate dress for all occasions, job, church, friends
Personal hygiene/grooming
Shaving, showering, haircuts, product usage
Safety in both home and community
Crossing streets, strangers, evacuation, community emergencies (floods)
Sex education
Awareness of appropriate and inappropriate behavior, strangers, etc.
Preparing & consuming food
Menu planning, budgeting, shopping
Care of clothing Laundering of clothes
Money management for home items, personal items, food

Social Skills

Handling praise & criticism
Knowledge of physical self
Understanding of personal space
Self-confidence
Aware of emotions
Respect for others
Understanding personal space
Respect for authority strengths & weaknesses
Appropriate behavior in public
Honesty
Appropriate behaviors
Developing friendships
Manners
Listening and responding
Eye contact, body language
Knowing appropriate dress
Knowing when to disclose diagnosis

Leisure/Recreation Community Participation

Community center recreational
Voting programs
Obeying laws
Community education classes
Locate and use local businesses, clubs, stores, banks, restaurants, team sports theaters, and libraries
Hobby clubs
Volunteer work
Church groups
Friendship circles
Choosing & planning activities
Independent recreational activities
Knowing traffic rules and navigation

Financial/Legal Concerns

Earned Income
Insurance
Wills/trusts
Supplemental Security Income SSI
Transportation
Social Security Benefits/Medicare
Guardianship
Bank account
Budgeting
Paying Bills
Understanding credit
Funeral planning

Pretty overwhelming, isn't it? Don't worry, we've got you covered. Through our person-centered planning sessions, we can professionally guide you and your family through these phases. It's never too early or late to start. Just start. Contact us through our "Contact Us" form.

Diagnosing Autism Spectrum Disorder

Sun, 28 Apr 2024 13:30:18 GMT

A complex disorder based on language, behavior and social deficits

Must meet criteria A, B, C, and D and occurred before the age of 22:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back-and-forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body- language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on the same route or food, repetitive questioning, or extreme distress at small changes).

3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C. Symptoms must be present in early childhood.

D. Symptoms together limit and impair everyday functioning.

There are also 3 “Severity Levels”:

Level 3: ‘Requiring very substantial support’

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.
Preoccupations, fixated rituals, and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

Level 2: ‘Requiring substantial support’

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRBs are interrupted; difficult to redirect from fixated interest.

Level 1: ‘Requiring support’

Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
Rituals and repetitive behaviors (RRBs) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRBs or to be redirected from fixated interest.

This is NOT intended to be a diagnostic tool. Seek the treatment of a developmental pediatrician, pediatrician or licensed psychologist in your area.

Source: http://www.dsm5.org

Autism Mentorship Program Launch!

Mon, 29 May 2023 13:15:16 GMT

Riley's Way Fellowship Grant Awarded!

Recently, our newest board member, Trina Beckwith, has been awarded a grant as a fellow for the Riley’s Way Foundation. Each year, the Riley’s Way Foundation holds a call for kindness in which they ask folks between the ages of 13-22 to apply for grants for projects that aim to increase community engagement while giving back to the community. This grant is accompanied by a fellow position in which the recipient will be provided a mentor, monthly workshops, and training retreats to help grow programs and organizations. After discussing Trina’s goal for a project, this was deemed a perfect fit.

Trina is from Vestal, New York, and is a rising senior at Seton Hall University, majoring in International Relations and Diplomacy with Minors in French and Nonprofit studies. After her time at Seton Hall, she plans to attend law school. Trina’s family instilled a strong spirit of volunteerism in her from a young age. She has dedicated her life to advocacy and giving back to the community. She hopes to do this with the Advocates for Autism with her new Project with the help of Riley’s Way.

This year, we will start a mentorship program for those with autism. Young adults with autism are encouraged to apply to act as mentors for younger teens who also have autism. We will find perfect mentor/mentee pairs and hold monthly events where mentors and mentees can meet and interact in the community. This project was developed to increase social skills, build friendships, encourage community engagement, and create a safe space for all to give back to their community. Mentees will gain new experiences and social skills while interacting with a mentor that can relate to them. Mentors will find a comfortable environment in which they can volunteer. Furthermore, events will offer the opportunity to form a relationship with a leading community member to act as a reference and provide letters of recommendation to aid in job searches, school applications, or other application processes.

When asked what inspired her to start this project, Trina stated that being at university opened her eyes to the lack of inclusion in volunteer settings. “Being at a Catholic University, we must all have volunteer hours to graduate. They offer many programs for us to gain these hours and provide transportation, and unfortunately, most of these opportunities are off campus in fast-paced environments. This is not a comfortable environment for everyone. Everyone should have the opportunity to give back to their community, and I hope this project allows more people to do this. Inclusivity is our goal.” This goal matched perfectly with that of the Riley’s Way Foundation, and we are so happy Trina could answer their Call for Kindness!

We are very excited to begin this project and will open applications soon. We encourage all to apply as there is a place for everyone with Advocates for Autism! We will hold monthly events applicable to various interests and in different parts of the community. View our Facebook page for updates and further information.

The Top 10 Autism-Friendly Places in the Southern Tier

Thu, 12 Oct 2017 10:47:40 GMT

ThinkDIFFERENTLY - It’s not about where there is do or how much it costs – it’s about acceptance.

This region is rich with fun places to go with your child with autism and here are just a few:
In this area, we need to be creative with the activities we plan because of the weather, but moreover, because as parents, we MUST plan ahead. It's not just about the cost either. Sometimes we are willing to pay and go the distance for a true, accommodating experience. Sure, it includes sensory-friendly, and though that is important, we at Advocates For Autism, are working hard at assisting businesses to become more sensory-friendly. But we work with these businesses to teach more about feeling welcome as parents. Having the safety net of being able to go to any staff member at that business and they immediately escort us to a quiet place where our child can finish a meltdown or decompress without literally everyone staring at you? Well, that's priceless. And we will continue to patronize those businesses. Here are the top 10 in this area of New York.

1. The Discovery Center – by far, hands down, old-fashioned fun! www.discoverycenter.org
A description of the Discovery Center is said best by those who created the organization:
The Discovery Center is phenomenal! This is where the imagination can be sparked and if you are looking to teach your child those imagination skills like pretending and role-playing, what better place to do it in than one that has a real fire truck, a real television studio, and even a telephone pole to climb! The Story Garden outside (free with no admission needed) seeks to spark the imagination of visitors through interactive experiences with images from favorite children’s books in an outdoor setting. The award-winning Story Garden promotes an appreciation for gardens, the environment, and, of course, having fun outside!

2. The Four County Library System: FCLS (sirsi.net) The local libraries, like Vestal, Broome County, Endicott, and Johnson City all strive to include our children in their planned activities. Click on the link to view the calendar for each site.

3. Southern Tier Community Center: https://thestcc.org/ Newly Renovated! This is the former Boys and Girls Club of Endicott. What a fantastic job they have done here. This center is a division of the Children's Home and so all profits go to their services, as they should. They couldn't be more accommodating. Check out the schedule for the new pool with its heated water and a place where your kids can truly enjoy the water and make some friends while doing it. There is a family-friendly locker room as well!

4. Rumble Town - The Binghamton Rumble Ponies! Binghamton Rumble Ponies | MiLB.com As I write this, we are working on more sensory-friendly ideas, autism-friendly ideas to fully accommodate a family with a child with special needs. We are assisting with the creation of Social Stories with PECS that can be viewed on your phone to assist with the schedule of activities at the park while sitting in your seat. There are new owners and new approach! We also include the adults. Again, it's more about the staff and the welcoming atmosphere, and the willingness to assist you in any way they can to make your night out at the ballpark more enjoyable.

5. Midway Bowling Lanes in Vestal, NY: www.midwaylanes1.com
This is family fun atmosphere that hosts bowling leagues and bowlers from age 2 to 102! More often than not there will be a group of kids with ASD playing a game or two and feeling, even if just for an hour, that they are just like everyone else. If it's been a while since you bowled, well now they have bumpers that move up and down according to the name of the player who needs them. There's never a worry with your kids playing here. They have other arcade games and are well known for fun birthday parties and you don’t have to plan around the weather.

6. Ross Park Zoo! Ross Park Zoo - America's 5th Zoo - These guys have been the most accommodating under the direction of the New Executive Director. We work together on some activities. Please support them. Go to their Facebook Page for recent events and photos. For anyone with a disability, that person can bring their community habilitative staff to enter free. Every year there is more added!

7. Animal Adventure and Safari Home Page - VisitAAP This is the place that April the Giraffe made famous. Under the direction of Jordan Patch, this place cannot be beat as far as place for our kids to express themselves, have a good time and not worry about what anyone is thinking. Who hasn't stood and roared at a Lion's exhibit? Jordan knows first hand what it takes to be a special needs parent. He gets it. If you need any assistance while there, just let one of the staff members know and they will do their best.

8. Binghamton University Events Center For BU Men's and Women's Basketball Games! Jr. Bearcats Club - Binghamton University Athletics (bubearcats.com) We worked with the Athletic Department to make a Jr. Bearcats Sensory Zone! This is THE place to go in the winter and you need a family function where ALL can go. There is a special room/zone set up with staffing, equipment and activities for those with special needs to escape to when it all gets to be hard for them to sit in the seat.

9. Our Space OurSpace Park - At Rec Park This is the FIRST of its' kind in NY State. It is a playground that is worth the drive! Free and has everything you would need for an entire afternoon out at the park. “OurSpace” is a City of Binghamton Parks & Recreation Project with a mission to encourage and engage our communities, with a focus on those with special needs, in physical and social activity by revitalizing a community park to provide opportunities for all individuals of all ages and all abilities to engage, explore and socialize.

10. Chucksters: Home - Chucksters (chucksters-vestal.com) Chuckster’s has been bringing the Vestal, NY area a Funbelievable time since 2010. With the World’s Longest Mini Golf Hole and eight more amazing attractions, Chuckster’s has fun for every family. Chuckster’s Funbelievable time doesn’t stop at the beautiful golf course. Our other attractions include, laser tag, ziplining, shoot-n-shower, batting cages, the jumpster, aeroball, rocking climbing wall and an aeroboard. Don't forget to get some homemade gelato on your way out!

An Interview with a Psychiatric Nurse Practitioner Student

Sat, 07 Oct 2017 18:13:12 GMT

REPRINT FROM SEPTEMBER 2011: Please note: All questions are asked by a Binghamton University (SUNY) NursePractitioner Student

NP Student: What are yourperceptions about autism, In terms of how it originated in children?

Sally: It is believedto be a neurobiological disorder, that is, that there is a variety of reasonsfor the onset. Either there is autism that appeared from birth on andwhen a family looks back they can usually see it in videos of their child andthen perhaps the environment triggered it to a more severe form or there is theregressive type of autism where the child was talking and developing normallyand then suddenly halted and began to regress. Generally, ourbelief is that there is something genetic being triggered by an environmentaltoxin.

NP Student: How can health care providers be more open and welcoming tothese children and their family?

Sally : By learningthe peculiarities - for instance, my son would shriek, kick and scream andfight whenever we pulled into the parking lot for the doctor's office. He hadexperienced many ear infections and not great experiences. He wouldscream the entire time. I would try to tell the doctors back when my sonwas only 9 months old, even back in 1993, that my son had autism. Thatthis was not normal. So doctors and practitioners need to listen to theparent. If the child is a difficult patient, then perhaps schedule thevisit for a time when the office is less busy. Absolutely no waiting canbe tolerated. This is the worst thing to do for a patient withautism. Listen and be tolerant of the parent's requests. If yoususpect autism, also test for immune system and GI tract disorders.

NPStudent: How can we make them feel safeduring check-ups in our clinic?

Sally: By knowingthat after you do something, for example a weight, height and then temperature- you need to do that every time and in that order. The child with autismhas an extremely good memory and needs to have these done in the sameorder. The mother needs to know that you are trusting herinstincts. The child needs to know that you are serious aboutmedicine - meaning if you want to check the ears, then get down to business anddon't use a lot of words and don't spend a lot of time trying to talk them"into it". Just say "I'm going to look in your ears withthis light" and then do it. A child with ASD needs to know theexact names of things. My son knew that it was called an otoscope andthat they were eustachian tubes, but he needed to be respected for his knowledgeand so did the mother who spent a lot of time trying to learn all she can abouther child.

NPStudent: What resources would yourecommend to these parents who need answers?

Sally: There aretwo really great resources - one is the Autism Research Institute and the otheris of course, this website. There's now almost too much informationout there and so by writing these articles and posting information, I can helppoint the parent or teacher where they need to go so they don't waste precioustime or get overwhelmed.

NPStudent: Howdo you differentiate between delayed development and/or behavioral problems andAutism?

Sally : Delayed development is just that... delayed butthe key is that even though it's delayed, it's EVENLY delayed. With autism,there is uneven development. For example, my son (again as an example)could sit up and feed himself a Zwieback cracker/toast but never rolledover. He could tell you the word "off" when you turned off alight at the age of 10 months, but couldn't mimic you when you kissed orsomething like that.

NPStudent: Are there any tools or diagnostic teststhat aid in diagnosing Autism that will help providers with early diagnosis?

Sally: The CARS -Child Autism Rating Scale - Has a version that's quick for docs to do as aprescreen when the child is 18 months and then there's the ADOS AutismDiagnosis Observation Scale.

NP Student: What is thenext step after diagnosis for the A) family B) child and C) health careprovider?

Sally:A. To grieve a bit and let the feelings and emotions bethere and be real. Don't deny them. Make the anger work for you byfinding the way to reach your child. You need to act fast, but notovernight. It's a process. Connect with other parents. Call yourschool district if the child is over 3 and your health department if they areunder 3 to get services going.

Sally: B. The childneeds to still be as accepted as the child you had the hour before you foundout. In other words, it's still the same child that was there allalong. Disclosure and framing of autism in a positive way to your childis essential. Don't be caught down the road when they are older trying toexplain autism to them. Be honest at the beginning.

Sally: C. Be there with resources that are listedon this website, Examiner. Don't discount or make light ofthe disorder. Connect them with other families and respect whatevertherapy or treatment they would like to seek out. If you don't providethat treatment, then refer them to someone who does. As long as it is nota harmful, invasive form of treatment, all forms of therapy and treatmentshould be considered. It's an individualized disorder. No two childrenare alike and so no two children with autism are alike.

Telemedicine for Autism

Sat, 12 Aug 2017 00:00:00 GMT

Telemedicine: Reducing wait lists for autism medical services

Telemedicine -- connecting health care providers and patients via computer or smart phone for diagnosis and treatment -- has been making it easier, and more cost-effective, to "see" the doctor. Using a camera-enabled computer or smart phone, patients with common health concerns can get some diagnoses without leaving their homes. Emergency room doctors and nurses are able to communicate with their peers in larger trauma centers via computer, as well.

Specific to Autism is the challenging situation to find experts in remote geographical areas including here in Binghamton, NY. And this was a problem 25 years ago and cannot be blamed on the pandemic, though that just worsened it.

A University of Iowa study, published in the journal Pediatrics, shows that parents with children on the autism spectrum are able to have a specialist address challenging behavior in these children by interacting over the computer, too, and at less than half of the cost of receiving similar care in person.

"A lot of kids who are on the autism spectrum have significant problems with behavior," says Scott Lindgren, PhD, professor of pediatrics in the Stead Family Department of Pediatrics at University of Iowa Carver College of Medicine, and lead author of the study. "These kids may have trouble following directions, or have problems when there are changes in their schedule or routine. They also don't always have good enough communication skills to be able to explain to someone why they're getting upset or having a meltdown."

Already we are seeing providers of telemedicine set up businesses with one being The Autism Tele-medicine Company. They state that they founded the company because they "bring not only the medical expertise, but also the three dimensional experience with the disorder that comes from living with it at home. This combination renders us vastly more empathetic and sensitive to what you may experience all the way from the crushing time of autism diagnosis through your child's adulthood." However, again, they are a private health provider and it is still a provider's choice as to whether or not they will accept public or private health insurance.

Another new Telehealth company is www.asyouare.com There you can receive an evaluation. It's the answer during this time of 2 and 3 year waiting lists and travelling hours with your child.

If you want to check out a larger center, there are major research centers in the country, particularly those under the National Institute of Health's Research on Autism Centers of Excellence not only provide this service but continue to research its effectiveness. These centers are located at UCSF, Boston University, Emory, UCLA, UNC at Chapel Hill, University of Iowa, and Yale among others.

Diagnosing Autism Spectrum Disorder

Mon, 30 Jan 2017 13:28:37 GMT

Did you know? There's a new way to DIAGNOSE Autism Spectrum Disorder!

The Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was released at the American Psychiatric Association’s Annual Meeting in May 2013. ASPERGER'S Disorder no longer is a Diagnosis all its own. The symptoms must meet these criteria now. See below.

Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body- language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C. Symptoms must be present in early childhood.
D. Symptoms together limit and impair everyday functioning.

There are also 3 “Severity Levels”

Level 3: ‘Requiring very substantial support’
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.

Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

Level 2: ‘Requiring substantial support’
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.

RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 1: ‘Requiring support’
Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.

Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

What if One Size does not fit all?
Does your child fit the new criteria? Or if you are an adult with ASD, do you? What if those with Asperger’s Syndrome do NOT meet the new criteria above, as I suspect many with Asperger’s won't then what are their options?

Try these diagnoses on for size:

A 05 Social Communication Disorder
T 00 Borderline Personality Disorder
T 02 Avoidant Personality Disorder
T 04 Antisocial Personality Disorder

These are just a sampling. See http://www.dsm5.org for more information.

Service Dogs and Autism

Mon, 30 Jan 2017 13:28:33 GMT

Need to justify purchasing a service dog?

Unfortunately for families and parents of children like those described above, there is no break from this constant demand. Children and adults with the diagnosis of autism are unique in many ways: The child with Autism does not connect well with his or her environment. Autism manifests itself most strikingly as impairments in communication and in the formation of social relationships. Children with Autism are often nonverbal, or when they are verbal they usually do not use the skill to actively communicate with other people in their environment. Many children with this disability have a strong need for a structured, routine environment; change creates feelings of fear and/or anxiety. Some children even exhibit serious behavioral changes including, at times, self-injury. Another behavior common to Autism is a tendency to wander away. Parents often refer to their children as “Houdini,” stating they are able to escape from even the most secured environment and the family usually has multiple locks on every door and window in the home. When this happens, the child may be in a life-threatening situation, especially if they are already out of the physical sight of their caregiver. Children with Autism often don’t respond to their names consistently, if they respond at all. They rarely understand the many dangers in their environment; an approaching car or a stranger with ill intentions. Many parents report their greatest fears center on their child being missing or if they look away only for a minute; they will find their child gone or darting out into the path of an oncoming car.
With the use of a Registered, Trained Service Animal, many families and adults living with autism are able to take their eyes off their child for a brief moment to attend to their other children, answer the phone or even use the bathroom alone!

These parents are quite adept at creating opportunities for their children which in turn makes it so their children can remain living with them. To remain as an intact family with a developmentally disabled child is rare. Not only do these parents find a way for their child to remain in their care, saving the state millions of dollars over a lifetime, but found a way for their child to stay living at home and do so safely. The safety is the key.

The dog requires specialized training costing thousands of dollars, but without this training, the dog will simply be nothing more than a pet; another living being for the parents to care for. A service dog’s sole purpose for a child with autism is to respond to the child in many ways, such as: The dog will interrupt the behavior of self-harming; social Isolation is lessened as the focus shifts to the dog, opens doors for socialization; enhances verbal skills by using commands for the dog; the dog will crawl onto the child's lap and calm the child; and lastly in LOCATING A LOST CHILD – The dog will have the ability to find child by various methods, i.e., tracking, area search, building search.

This is NOT ordinary obedience training that an owner brings the dog to the local vet, vocational school or even use of a video can do. This is training that only a specialized behaviorist can do and the particular behaviorist chosen for this task requires travel on the part of the parents. The parents and anyone who interacts with the dog will need to undertake this type of training in order to ensure the dog’s purpose and role is carried at all times. This may include but not limited to: The parents, the child’s staff, the siblings, and of course the child himself will also participate at some point.

The bottom line is safety. This canine companion plays an important role along with the use of locks, fences, 911 and tracking devices to keep a child with autism SAFE and HOME. Having this dog is much more than a pet. It is a large sacrifice on the part of the family. The family has already put all the locks, bolts, video monitoring, GPS devices and alarms on their home that they can. The potential for liability far outweighs the cost of the service dog.

Lastly, I now have a Service Dog, for my son. As a dog lover and wanting to provide my son with all the opportunities available to him, a service dog was just the next logical step for our family. One company, located in NY State's Hudson Valley is BluePath Service Dogs and is highly recommended. If you are not in NY State or want a few other choices, try these: www.autismservicedogsofamerica.com ; www.autismassistancedog.com ; www.4pawsforability.org ,

Top 5 Apps for Autism

Mon, 30 Jan 2017 13:28:32 GMT

There are hundreds of apps available that could take hours on a limited schedule to choose the right one - Here's the Top 5.

With the increase in adults with autism living in the community in their own home or apartment whether alone with support or with others with support, the development of apps for smart phones and tablets will make the all the difference. Many of those who are now embarking on this huge transition are of the age where using a tablet in school or on a daily basis was not something they were used to. Therefore, apps are not the first thing their parents go to for learning. Some use pictures from magazines or familiar photos taped to a poster board, or the use of white boards on the refrigerator to teach a skill. But a combination of the 'old school' method developed by Linda Hogdon, CCC-SLP in her book Visual Strategies For Improving Communication. as well as apps for mobile devices with support from direct care professionals and parents, an adult with autism will find keeping up with daily household tasks and grooming will be easier to attain.
There are hundreds of apps available and take hours on a limited schedule choosing the right one. Here are the top five for creating independence, with that independence for an adult with autism being defined as learning to manage time, steps in grooming, tasks of daily living for household maintenance, medication management and safety for parents and caregivers to check in. Note, not all of these apps are offered for free.

The first step in learning time management is by being able to judge lapses in time, such as approximating how long it takes to perform the morning routine in order to get to work on time, the time it takes to do dishes or take out the garbage. Everyone knows that when teaching a person with autism a new skill, it starts with relating it to something the love, such as how long do they have to wait for the caregiver to arrive. The method of a Timed Timer was used and implemented in schools througout the country. It is also available on both Google Play-Timed Timer and iTunes Store - Time Timer

Next is the app for basic grooming, but they do have them for the more involved steps in a skill such as shaving. Yet, personal care is so individualized that one app fits all is not possible. Instead, the Personal Success iTunes app can be personalized.

Third, we have the need for household maintenance and chores, such as feeding pets, washing dishes, and making their bed. The idea of a checklist to see what is done or not done is vital. This is very similar to the concept used originally with the 'all done' folder when using the original Visual Strategies as mentioned above. Here, there is My Chore Pad, available in iTunes, or the one on Google Play as Chore Check List seems to be more mature and better suited for an adult.
Of course, medical management with medications and blood sugar checks, as well as reminders are all available on the Touch Streams Solutions app. This is an entire program that requires the purchase of a tablet. Still, it's comprehensive.

Last of the top 5 apps for increasing independence in adults with autism is one that will provide security and peace of mind for caregivers. This is done through the use of passive technology in apps such as Wellness alarm services.

There are resources available for full listings of mobile apps for those with autism at Autism Speaks and on the Friendship Circle.

Copyright - Advocates For Autism, LLC and Sally J Colletti

Parents as Paid Caregivers

Sun, 29 Jan 2017 01:58:03 GMT

NYS Parents of Children with Special Needs

Starting in April of 2016, the Social Services law will be amended in NY State to allow for parents of their adult child to be paid under the Consumer Directed Personal Assistance Program (CDPAP) , as long as the parent is not also named as the designated representative. This is a program where the consumer, i.e., the individual with the disability, can hire anyone he or she chooses.

The CDPAP is a statewide Medicaid program that provides an alternative way of receiving home care services, where the consumer has more control over who provides their care and how it is provided. Rather than assigning a home care vendor or agency that controls selection, training, and scheduling of aides, the "consumer" or the family member, friend or guardian directing his/her care performs all these functions usually done by a vendor.

The change was signed into law by Governor Cuomo on November 20, 2015 which amends the Social Services Law §365-f, subd. 3, L. 2015 Ch. 511, enacting Senate bill S05712-A proposed by Senator Simcha Felder. State regulations now prohibit only the spouse or parent from being hired as the CDPAP aide, but allow a son or daughter or any other family member, provided the family member does "...not reside with the consumer or ... who resides with the consumer because the amount of care the consumer requires makes such relative's presence necessary...."

The aide need not be 'certified' as training is done by the consumer and family. However, CDPAP aides may perform skilled care that otherwise only be performed when a person cannot self-administer, such as suctioning tracheotomies, insulin injections, administration of oxygen and medications.

What's all this mean for families? Many parents of developmentally disabled children are stressed to their maximum abilities when they have a child who requires 24/7 care. If there are two parents in the home, they often work opposite hours of one another in order to be sure their disabled child is cared for in their best interest. They do this in place of a group home, as they want their child home with them for as long as possible. After all most are happiest living with their parents. While the parents are very willing to do this for their children many find that by the time their child has reached the age of 21 and they are no longer in a school setting, they are the full-time caregivers for their now adult children. Where there were financial strains prior to the child becoming adult, they now find themselves bankrupt and on assistance programs. At planning meetings, advocates often hear from parents the need to work to support their family, yet they are staying home unpaid in place of a professional caregiver. There just aren't enough caregivers to go around. The solution for several states since 2011 has been to pay the parents; however, the Home and Community Based Medicaid Waiver program in NY has allowed for everyone in the family except the parents to be paid.

Parents will need to call their local Consumer Director Personal Assistance Program (CDPAP) agency for their county. A good place to start is the Department of Health who contracts with the fiscal as the aide is not an employee of a home care agency, but is instead an independent contractor, who is paid wages and benefits by a "fiscal intermediary," an entity that contracts with either the county or a managed care plan to provide services authorized by that county or managed care plan. It is the fiscal intermediary that pays the aide wages and benefits.

"This is wonderful news for families all across New York State. There is no one who understands the complex needs and challenges of a child with a disability better than a parent," said Assemblyman Joe Morelle (D-Irondequoit), who co-sponsored the bill.
Copyright - Advocates For Autism, LLC and Sally J Colletti

Autism and employment in New York State?

Sun, 29 Jan 2017 01:50:40 GMT

YES! People with autism make excellent employees!

As an employer, other than the obvious contribution to your community, what’s in it for you? The data is in and studies upon studies are proving that a person with ASD is someone who should be your next new employee.

Also, as an employer in NY State, you will get tax credit. What are the advantages of the New York State tax credit WETC? According to the NYS Department of Labor, employers that do business in NY can trim their labor costs through several NY State workforce and economic development programs. Employment-based tax credits save your business money by cutting federal and state liability. You may obtain tax credit savings from $750.00 to $9,000.00 simply by hiring ONE employee with a disability. Call the New York State Labor Department at 1-888-4-NYSDOL or go to the website www.labor.ny.gov .
A person with developmental disabilities can make a great addition to your workforce. They have:

Motivation
Dependability
Flexibility
Positive Attitude
Average Job Retention for greater than 2 years is 67%!

Need more reasons? Here’s a few:

Motivation – these employees with always be on time, always report to work – a report of perfect attendance is not uncommon. They will stay at the job until retirement age. They WANT to work!
Pre-insured and with job coaches ! Many people with autism have consolidated supports and services where a job coach is paid for by their services funding stream and the liability for that job coach is on that funding stream, not on you. The job coach will be there as much or as little as the person with autism needs it. Many with autism are not interested in healthcare benefits, as they have funding in place that will remain for the rest of their lives.
Expand Market Share: employees with disabilities can relate better to customers with disabilities, who represent $1 trillion in annual aggregate consumer spending.

Let’s face it, with 1 in every 37 boys in NY State having a diagnosis of autism, you as an employer will be part of the solution!
Copyright - Advocates For Autism, LLC and Sally J Colletti

For more information, read below.
www.labor.ny.gov/businessservices
www.thinkbeyondthelabel.com
www.advocatesforautism.com
www.opwdd.ny.gov