Autism Reported Cases increase to 1 in 59 children via new Reports

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May
29

Here is an article from US News and World Reports. Autism is now reported in 1 in 59 children, 1 in 36 children in the state of New Jersey.  This likely due to more diligence and literacy among parents at an earlier date moving them towards earlier detection. However, the word still needs to get out sooner and more vocally to lower income and minority communities who are still lagging behind in both reported cases and the time frame where children are detected with ASD.

Again, in New York State, the Board of Health (BOH) provides FREE autism evaluation and remediation until age 3, at which time the Board of Ed (BOE) takes over and provides detection and remediation services from age 3 to age 5–free of charge. This information is found on our web site on the resources page or email us and we’ll be glad to point you in the right direction.

https://www.usnews.com/news/health-care-news/articles/2018-04-26/autism-rates-jump-among-us-children

March
20

NPR author Casey Rentz writes about how, in spite of zero correlation that autism is influenced by gender, socio economic group, race, or even sex, it still is grossly underreported in the minority community. The article explains why. It's part lack of knowledge or awareness about autism, especially highly functional spectrum children and other factors. The bottom line is, the word needs to get out to EVERY community, no matter the race, color, creed, whatever, to become aware of how to spot autism and be courageous to pursue early detection and intervention. Autism is a gift--the sooner you find that out about your child, the sooner you both can begin to understand and embrace that gift.

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Girls Night Out

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February
19

On our blog we will try to write about some of the amazing articles and stories that are coming out all over the world on our community. Accomplishment, happiness and strength will be our general theme. We all know what a tremendous gift having a child on the spectrum is, deepening our love and connection to our children in ways we couldn’t have imagined. It may be exhausting at times, but it’s even all the more gratifying when the effort we put in and love we give from our hearts produces results.

Our first article Girls with autism need help honing social skills in realistic settings, https://spectrumnews.org/opinion/viewpoint/girls-autism-need-help-honing-social-skills-realistic-settings/

The article is about a network of young women around whom a young woman, 21 feels comfortable and confident. The network grew out of her participation in Girls Night Out, a social skills and self-care program at the University of Kansas Medical Center in Kansas City designed specifically to help girls with autism. The program has been a gateway for Brettell, since the age of 14, to build her own friendships and practice social interactions through skills groups and informal gatherings.

Beyond friendships, navigating the workplace and other community roles requires increasingly sophisticated social competence, especially for girls and women, who are expected to be more socially agile than boys and men. Yet few programs are designed specifically to develop social skills in girls with autism because much of what we know about the condition is based on boys.

The author, Rene Jamison, from the marvelous site Spectrum goes on to say, “We need innovative approaches that promote social competence in girls on the spectrum and help them establish rewarding relationships.”    The NYC Autism Group is especially interested in furthering dialogue and conversations on girls with autism. My 11 year old daughter Katarina will need some guidance on how to tap into her gifts as a young woman in a predominantly man’s world.  We think Girls Night out is a landmark organization and we plan to introduce similar in NYC. Stay tuned!

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Autism Early Screening & Detection

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November
29

Here’s a good article on the criticality of early autism screening and detection testing beginning as soon as 18-24 months, from an article from our friends at the Reno Gazette Journal. http://www.rgj.com/story/life/wellness/2017/11/28/experts-recommend-screening-autism-18-and-24-months/902123001/

The article references a 23 point test for early autism detection, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up, (M-CHAT-R/F)TM by Diana L. Robins, Ph.D,  Deborah Fein, Ph.D and Marianne Barton, Ph.D. Here is the link to the original PDF you can download. Now of course this test should be administered only by an authorized medical provider.

http://www2.gsu.edu/~psydlr/M-CHAT/Official_M-CHAT_Website_files/M-CHAT-R_F.pdf

November
20

Here’s a really informative article that details how autism diagnoses are still tied to socio economic profiles of people. While reported autism cases have risen dramatically among blacks and hispanics in the past 10 years or so per the article, so that they are closer to white and white affluent categories, studies cited show there is no correlation between income or race when it comes to autism diagnosis. There is no bias towards race or income.  A time back it was felt autism was reported at a higher rate or was more prevalent in affluent whites because of the higher likelihood of submitting to early diagnosis but that has been dispelled, according to the article.   Bottom line is, early intervention and detection should become the norm for everyone of all races and we need to get the word out.

Source: Spectrum Autism Research News

Race, class contribute to disparities in autism diagnoses

Here are 10 tips that I’ve learned over the years

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November
18

Here are 10 tips that I’ve learned over the years (appeared originally in a blog from a wonderful parent from Seattle WA).  (It’s important to read articles on how other autism parents cope around the country and even the world. 

I highly recommend everyone setup a daily Google Alert for “Autism” and you will receive 20 or more articles on autism from around the world. 

  1. Put on your oxygen mask first. As parents raising kids with significant needs, our own self-care really matters. When kids are diagnosed with autism, we parents begin a process of intensive therapy … but rarely is it mentioned that parents need to make space to take care of themselves, emotionally and physically. When my son was first diagnosed, I didn’t make time to get to the dentist for over two years — and ended up with a nasty cavity that could have been filled easily. We need to be strong for our kids and for ourselves. Prioritize time each day, whether it’s for a 10-minute meditation, a quick walk or whatever you can do to make yourself feel well.
  2. Find your tribe. Whether online or in person, finding peers who can relate to your journey is essential for your sanity and growth. As your children grow up, it really helps to have a couple of friends on your speed dial who “just get it.” Look for parent support groups in your area, contact Parent to Parent, a national organization that matches parent mentors, or check out the Autism Moms of Seattle group on Facebook.
  3. Nurture all of your kids. Autism can take over a family, but nurturing your child’s siblings is essential to your family well being. It helps to make special time for your child(ren) who doesn’t have identified “special needs” to just be with a parent. If your schedule is full, consider doing breakfast before school or work once a month or sneak out for an ice cream date on a Saturday night. Our calendars get packed with therapy appointments so setting a repeating event for time with your other kids can help!
  4. Marriage plus autism does NOT mean divorce. There are myths floating in the universe that autism parents are destined for divorce, but this simply isn’t true. Partners can in fact grow deeper in their partnering through working together. Just as it’s essential to make time for other children, it’s crucial to make time as a couple to do fun things and talk about anything at all — as long as it’s not autism related. If you’re fighting a lot or struggling to get on the same page in terms of your parenting, find a great counselor right away to coach you.
  5. Find activities that work for the family. Some of my favorite memories over the years were those times when we figured out ways to enjoy simple family time together: taking a walk, going to our neighborhood pool, exploring different nature trails. Whether taking part in community events, enjoying the outdoors or finding an inclusive house of worship, you want to figure out the best ways that your family can get out and be part of a community.
  6. Let go of obligations. When you have a child with autism, you need to get comfortable saying “no” to obligations that you simply don’t have the time or energy for. Recognize that you’re holding much more than a parent of typical kids and by caring for your family, you’re giving back to the community. Practice saying no.
  7. Positive people only. Similarly, spending time with negative people can sap your precious energy. Over the years of parenting my kids, I’ve released some draining, needy, negative people in my life. Learning to set clear boundaries and encourage positive relationships has been so good for me — I feel supported by the people who are close to me, through the ups and downs that have been part of George’s growing up.
  8. Make time for your emotions. It’s normal to have good days and challenging days. For some people, talking to a friend is most helpful while other parents benefit from finding a therapist. I’ve recently created a reflection journal for parents that gives you space to express your joys, blessings, hopes and challenges. It’s a great resource if getting to therapy isn’t an option for you right now!
  9. Keep advocating. At whatever age or stage your child is, there is hope that they will continue to learn and grow.  At different stages, you may encounter teachers, therapists or even friends and family members who don’t believe in your child. Hopefully, others will follow.
  10. Stay present. Autism parenting is like running a marathon, not a sprint. Sometimes we need to take life life hour-by-hour and even minute-by-minute. It’s easy for worries and fears of the future to surface, but guiding our attention to back to the present is more helpful. Remember that no parent knows for sure what the future holds for their children … staying grounded and hopeful is a healthy practice for us all.

New York State Insurance Bill 2011 Outlining Autism Coverage

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November
18

Every parent with children on the spectrum should be familiar with the landmark bill that was passed in New York State in 2011 guaranteeing coverage for autism services via insurance. Over 40 states in the US offer insurance coverage for autism services.

An Excerpt from 2011 NYS Insurance Reform Bill:

▪ HEALTH INSURANCE ▪ A. Coverage for Autism Spectrum Disorder A.6305-A and A.8512(Morelle) / S.4005-A and S.5845(Fuschillo) Chapter 595 and 596 of the Laws of 2011 ”Autism spectrum disorder” is a newly designated category for the various developmental disabilities that cause problems with social interaction and communication.

According to the latest version of the Diagnostic and Statistical Manual of Mental Disorders, a continually revised gold standard reference manual published by the American Psychiatric Association, the range of conditions currently included in the category are: autistic disorder; Asperger syndrome, and; Pervasive developmental disorders not otherwise classified (atypical autism). In 2010, the Centers for Disease Control reported that the number of children diagnosed with an autism spectrum disorder (ASD) average 1 in 110, nationwide.

While the New York State Early Intervention Program (EIP) ensures treatment for children under the age of three years, at no cost to the family, these families do not have access to reimbursement for necessary treatments in the commercial insurance markets once their children are no longer eligible for coverage under the EIP. Chapters 595 and 596 of the Laws of 2011 will expand health insurance coverage for the screening, diagnosis, and treatment of ASD for HMOs, individual and group health insurance policies. In addition to strengthening existing provisions, the chapters require insurance plans to cover the screening, diagnosis and treatment of ASD with cost sharing equal to other covered benefits including treatment provided on a supplemental basis outside of the educational setting if deemed to be medically necessary.

Covered treatment for ASD now includes behavioral health treatment including applied behavioral analysis up to $45,000 per year per covered person; psychological care, psychiatric care, and medical care when provided by a licensed health care provider; and therapeutic care including habilitative and non-restorative care, and pharmacy care provided the policy provides coverage for such benefits. Coverage for such services is subject to utilization review and external appeals as well as case management and other managed care provisions. Such coverage provided on a supplemental basis is prohibited from being affected by an individualized family service plan, an individual education plan, or an individualized service plan.

  1. Early Intervention A.384-B (Paulin) / S.4013-C (McDonald) Chapter 406 of the Laws of 2011 The New York State Early Intervention Program (EIP) is part of the national Early Intervention Program for infants and toddlers with disabilities and their families. First created by Congress in 1986 under the Individuals with Disabilities Education Act (IDEA), the EIP is administered by the New York State Department of Health through the Bureau of Early Intervention. In New York State, the Early Intervention Program is established by Article 25 of the Public Health Law and has been in effect since July 1, 1993.

According to the EIP, in order to be eligible for services children must be younger than three years of age and diagnosed with a disability or developmental delay in one or more of the following areas of development: physical, cognitive, communication, social,emotional, and/or adaptive. Services provided through the EIP by local service providers contracted through the municipality, are first billed to the insurance carrier if the individual has private health coverage and then billed to the respective municipality and reimbursed by the state.

However, the municipality does not always know what services, if any, are covered under an individual’s private insurance and, as a result, facilitating reimbursement from private carriers can be burdensome and may result in lack of payment. Chapter 406 of the Laws of 2011 requires insurers to provide municipalities with information on the benefits available to a child under their parents’ policy upon the insurer’s receipt of a written request and notice from the municipality of a subrogation of rights under the policy from the parent.

Parents must provide the municipality with 4 information on any insurance plan if their eligible child has coverage, as well as a written referral from a primary care provider to document the medical necessity for early intervention services. Claims for EIP services shall also be submitted by the municipality within one hundred fifty days from the date of service.

NYC http://www1.nyc.gov/site/doh/health/health-topics/early-intervention.page

November
14

Our Story

Co-Founder Richard Schreiber

Kat

Co-founding the NYC Autism Community is very personal for me. I am the proud father of an autistic 11 year old girl who is my pride and joy. My daughter has Asperger’s.

Our journey began early on in our daughter Katarina’s life. We knew she was different when she used to listen to a lyrical CD and dance and spin around like a top yet not get dizzy. Kat would also never complain about pain if she fell, hurt herself, she virtually never cried. She also wasn’t terribly verbal until 4th grade.

I tell this story because I want ALL parents to be aware that if they think their child exhibits even a few of the dozen or so autistic characteristics, even as early as a year old, get your child examined. They are FREE early intervention programs offered by the Department of Health (ages 1-3) and even the Board of Ed (ages 3-5). Yes it’s FREE folks—and even intervention services are free.  As early intervention and remediation of Autism is so important—it can even reverse or reduce symptoms—and there are free services available out there, take advantage of them!!!

In spite of all the indicators and the whispers from some family members, no one uttered the dreaded “A” word for autism, at least that’s how we characterized it. It simply never dawned on us that our daughter was autistic. This was 2009-2010 when autism was not on everyone’s minds like today.

So, a little bit in denial and also not taking the initiative to have Katarina checked out formerly (we actually just sort of shrugged and liked the fact that she was “different’), off to school she went. The fact she tested well and got into an advanced gifted and talented program at age 4 energized our thinking that Kat was OK, after all, she was smart and smart enough to test well.

Fast forward 2 years later, she’s fidgeting in class, not controlling her body, and not being effectively social and her first grade teacher, who had a background in Special Needs Children, wrote a letter articulating Kat’s condition to the school’s principal, which we later received in the mail and it was now necessary to get Kat officially assessed with a behavioral psychologist.  The report came back with the diagnose that Kat had ADHD. Well at least now we now know what it is (but not what to do about it).

We took Kat about six months later to another behavioral psychologist who also evaluated Kat but in a more intimate one on one setting. Afterwards she came back with “Your daughter doesn’t have ADHD, she has Asperger’s.”  It thought, “What’s that? It sounds like a type of gum.”

Less than a year later, after summer camp where we enrolled out daughter in a special camp just for highly functional Autistic kids, the verdict came back: “Kat is too disruptive in class. You need to explore drug options.” I fought this for months, maybe years, but now was resigned to consider it. If it helped my daughter, that was what I was committed to.  After three years, fast forward, my daughter is skinny, doped up and generally maudlin but she got good grades. We as parents were more fixated on her academics than her socialization challenges. We didn’t know the true extent. We knew she had few friends in school but I guess we were expecting this to change. It didn’t.  By the time Katarina graduated from elementary school, when I picked her up on her last day of school, she was in tears.  She just wanted to leave without saying goodbye to anyone. When I asked “Don’t you want to say good bye to anyone?”

She replied, “Daddy for six years nobody wanted to be my friend.” I will take those words to the grave. I consoled my daughter, we went to McDonalds and had some fries and an ice cream cone and I contemplated where I had gone wrong. In truth, Kat's classmates had tried to befriend her and always treated her well. But most had stopped trying to be her friend because when they tried, Katarina did not pick up on it, so after awhile they just accepted her for who she was but let her be.

We now knew that Kat’s challenges with her socialization, not picking up on social queues of other classmates, acting below her age and not respecting other’s personal space had all created a huge social barrier for her. Now how do we come up with ways to help her with this? On top of that, Katarina complained that the drugs she was taking, the stimulant Adderall, made her dopey and was the cause of her socialization problems because it robbed her of her normal spontaneity and creativity—who she really is.

So we took her off Adderall as she went to her summer camp again, and kept her off it as the school year began.  Kat gained 25 pounds and became the rambunctious, effervescent person we knew before. But now, the challenges that the Adderall was addressing have come back. And there you have it. On to the next phase in her life, middle school, a work in progress.

Co-Founder Melissa Fanny Handman

Co-Founder and my partner in the event, Melissa is an expert special needs child care provider who will speak on several autism related topics. Melissa grew up on the Upper West Side and has a background as a teacher in the NY school system.

Melissa’s teaching career began as a substitute teacher, licensed to teach Social Studies, assigned to teach Algebra, at the High School for Graphic Communication Arts in Manhattan. In 2003, she moved abroad to Paris, France where she founded a school that provided tutorial services to the local international population. Returning to New York I taught English, Social Studies and cross-curricular activities at a Manhattan private school for twice exceptional students. Melissa has also had the privilege of serving as a District 75 teaching fellow in 2016.

Melissa provide one-on-one lessons, coaching, and tutoring, specifically tailored to an individual's needs, working closely with the family, school and other providers when necessary.

Melissa's teaching philosophy is that no one fits in the same box. Well-worn paths may not be the right ones for your child. Let's take "the road less traveled by" and transform learning from a source of anxiety to a source of JOY. Amen to that!

The Reason Behind Our Community and Our Events

Parents with autistic children often feel uncomfortable  going out in public because of the concerns of the behavior of their child will call attention and neuro normal folks would be aghast. Families become self-conscious. Families with autistic children also sometimes feel that they are in it alone, and the pursuit of information on autism, with all the different resources and the tendency for each autistic child to be different, meaning lots of trying different strategies, treatments and interventions until you find one that works. It’s tough, tough, trying work.  It can sap the strength of parents.

We want to create a space where families with autistic children can come to an event with their kids and speak openly with other like parents and exchange ideas and strategies. And also where families can find expert resources and talk to some about some of the issues they are facing so they don’t have to feel alone.  We aim to help families celebrate their autistic children for their uniqueness and for being different hosting events, indoors and outdoors with safe events that inspire their children.

Our first event is on Sunday November 19th from 3PM to 7PM and the theme is, good conversation, fellowship, games for the children with some (free) appetizers, drink and screening of a movie that is a stirring story of accomplishment for autistic children.  We’ll have a raffle of some prizes and a panel of autistic providers to provide information and encouragement.

For future events we plan trips to museums, animal farms, technology centers, dance studios and whatever our community sees fit!

NYC Autism Community’s Inaugural Event on 11/19/17

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November
11

Come to our first event on Sunday November 19th at 3PM to 7PM at the wonderful bar restaurant Joshua Tree!

NYC Community Group

An Opportunity for Families to Come Together

for Fun, Entertainment & Learning!

Sunday, November 19 – 3pm-7pm

@Joshua Tree – 513 3rd Avenue, New York, NY ***Private Room***

Families with autistic children face a variety of unique challenges, often leaving little time for fun, togetherness and learning from others who share this journey how they have learned to make the most of all that life in New York City has to offer.

Our goal is to bring the wonderful members of our community together and we hope you will join us on Sunday, November 19 for an afternoon of fun, games, fellowship and entertainment at our inaugural Autism Family Gathering!

Richard Schreiber & Melissa Fanny Handman, Hosts

Food – Games – Conversation – Wisdom from Autism Experts on hand

PLUS a Screening of the Award-Winning Documentary, “Swim Team” – the story of young autistic swimmers who became champions, thanks to individual determination, team spirit & the support of loving families

Please RSVP!    Recommended donation: $20 at the door – All proceeds go to Autism Speaks

To register, visit: https://www.eventbrite.com/e/nyc-autism-community-group-get-together-you-are-not-alone-tickets-39719779931

Or call 917-969-9271, email at richard@nycautismcommunity.com

Together We Can Create A Better World for Our Children!