Through the Looking Glass

BY Emily Colin


The saying goes that for every person with autism youve met youve met well one person with autism and it couldnt be truer. This lifelong developmental disorder manifests differently from one person to the next ranging from severely affected individuals with nonverbal communication extraordinarily impaired social skills and self-injurious behavior to high-functioning individuals who might just seem a bit quirky to those not in the know like Aaron.


When Helayne and Jeff Goldmans son Aaron was born they didnt notice anything out of the ordinary. But as Aaron approached 18 months of age it became clear that he was different from other children.


“We noticed that he had a huge obsession with shapes and letters He also could count well into the hundreds. He had a very good understanding of the alphabet and planets. Anything that had an order that was always the same and predictable ” Helayne says.


At first Helayne and Jeff simply thought that their child was very bright which he was. But as time went on they began to notice that Aarons skill set was limited to a particular repertoire. “When we would have discussions it was always the same conversation ” says Helayne. “He wanted to converse but he didnt have the tools.”


Alarmed the Goldmans took Aaron to the Childrens Developmental Services Agency (CDSA 910-251-5817) in Wilmington where he was diagnosed with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) an autism spectrum disorder. Devastated Helayne sought a second opinion then a third. Her search for answers took her all the way to Baltimore to the Johns Hopkins Kennedy Krieger Institute. The doctors there confirmed what the others had said: Aaron had autism.


They said a lot more but most of it was Greek to the Goldmans. For them as for many people the word autism brought to mind Dustin Hoffmans character from the movie Rain Man a predominantly nonverbal individual with the phenomenal mathematical abilities of a savant. But this character is the exception not the norm. The autistic spectrum is wide and only a very small percentage of individuals have savant-like abilities.


Perhaps this is the reason that today when as many as 1 in 150 youth are estimated to be autistic diagnoses of high-functioning autism are increasing more quickly than any others on the spectrum; the symptoms are more insidious and harder to pinpoint. In fact the one quality that all individuals with Autism Spectrum Disorders share is challenges with social communication poor eye contact difficulty assuming another persons perspective in conversation or in life. Just as typical children require an academic curriculum in reading and math youth on the spectrum need a supportive social and emotional curriculum that can help them interpret others body language expressions and actions compiling a social rolodex to draw on in times of uncertainty or stress.


But Helayne didnt know any of this not yet. Armed with her sons diagnosis she did what most parents with Internet access would do in this situation she went online. And then she froze. “After the diagnosis I did nothing ” she admits. “I didnt freak out until it started to set in.”


Her revelation came after a family trip. “Aaron was symptomatic and his grandmother hadnt been around him much even in his babble he was repetitious and nonsensical. The look she gave me it was pity ” Helayne says her face tightening at the memory. “I came back from the trip and started Aaron on the gluten-free casein-free diet ” one of the many alternative approaches to treating autism and an undertaking that was nowhere near as simple as it sounds.


Helayne is the first to say that the diet is not a medically accepted intervention. She checked with her pediatrician first who said “I dont think the diet could hurt him.” Thus bolstered she proceeded. “I was overwhelmed at the prospect of being a baker and a cook which I never was ” she says matter-of-factly. “I had my nervous breakdown and then I became all of those things.”


Her efforts paid off. Just a few weeks after starting the diet the Goldmans began to see changes in Aaron: “He was more expressive. He had more eye contact. His language opened up.” Aaron stayed on the diet from age three to age four-and-a-half and Helayne believes that it made a real difference for him. “I believe that there is a subset of children that do respond very successfully to dietary intervention ” she says.


Diet or no diet by no means was this all she did. Like most parents of autistic children Helayne combined a range of services to determine what would work best for her son. “I went to community Floortime seminars ” she says referring to an approach to autism pioneered by Dr. Stanley Greenspan and popularized in Wilmington by Dr. Nadine Antonelli herself the mother of an autistic son. “We had services through CDSA and then through the schools and UCP/ECOS occupational and physical therapy.”


Today Aaron attends first grade at Holly Tree Elementary one of five elementary schools in the county offering among other services an Intensive Social/Communications Support (IS/CS) program that is inclusion-based; children are pulled out of the classroom for supportive curricula then returned to the mainstream setting. (The other elementary autism program sites are Anderson College Park Eaton and Snipes.) Aaron still has residuals and the process isnt over yet. Just around the corner is third grade where concepts become more abstract a transition that many autistic youth find challenging.


If theres anything thats in short supply when it comes to treating autism its certainty. Parents are faced with a plethora of options: to vaccinate or not to vaccinate? Is behavioral therapy the way to go or would Floortime be a better approach? Should you try altering your childs diet eliminating yeast and adding B12 injections or investigating many of the other alternative therapies that are currently available? Autism is such a complex disorder that few practitioners agree on the causes let alone the treatments and the truth is what works wonders for one child may not be effective for the next.


Treatment and intervention options: whats out there



Here in North Carolina were fortunate to have access to NC TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren 910-251-5700) a program based out of UNC-Chapel Hills Department of Psychiatry that has regional centers across the state including one located right here in Wilmington. “TEACCH has been around since the early 1970s. We provide lifelong treatment and education for individuals with autism ” says Edie Hughes longtime psychoeducational therapist for the Wilmington TEACCH Center. “A child doesnt need to have a diagnosis to come to us just red flags like not paying attention to people or a language delay If its caught before the age of two or three kids look a lot better when theyre five.”


As overwhelmed with clients as TEACCH is the organization has a formidable waiting list its good that there are a number of other services available locally to serve autistic youth. For children up to age 3 the first stop is usually the CDSA for evaluation and diagnosis which then connects parents with other services in the community. For ages 4 and 5 the preschool coordinator in New Hanover County is generally the starting point.


Both the CDSA and New Hanover County Schools (NHCS 910-763-5431) refer children to Easter Seals/UCP-ECOS (Early Childhood Outreach Program 910-392-7003) funded in part by Smart Start of New Hanover County. ECOS supports inclusion in community preschools and childcare working with children ages birth through 5 in their existing environments using a variety of methodologies including Floortime Applied Behavioral Analysis therapy (ABA) and TEACCH. They emphasize early intervention and if contacted initially by parents caregivers or preschools will work to develop strategies for children to succeed referring families to the CDSA or NHCS preschool coordinator if further evaluation is needed.



Parents: an incomparable resource



Parents often provide the best support for other parents. WRAPS (Wilmington Regional Autism Support 910-762-6764) a support group chapter of the Autism Society of North Carolina has been meeting for over 10 years both in person and via an online Yahoo group.


Enter Teresa Mebane a parent advocate for the Autism Society of North Carolina trainer for Family Support Network and co-founder of the WRAPS group. The mother of three autistic boys Logan (age 9) Matthew (age 18) and Justin (age 20) Teresa understands firsthand what its like to live with this disorder. Shes been through it all from the shock of early diagnosis to the struggle to figure out how to provide for her sons when she and her husband are gone. In her role as a parent advocate she brings all of her experience to bear in the hopes that she can make other families lives a little easier. Her territory: Bladen Brunswick Columbus Duplin New Hanover Onslow Pender and Sampson Counties.


Mebanes story is a familiar one. “We initially thought Justin was just hard of hearing ” she says of her oldest son. “Then I saw a movie Son-Rise (about a child with autism) and something resonated. I just sat there crying.” She took Justin to the CDSA where he received a diagnosis of PDD-NOS at the age of three. “It was shocking to me. I was a little in denial ” Mebane says. Her search for information has transformed her into a tremendous resource for other parents who are traversing the maze of raising children with autism spectrum disorders from initial diagnosis to starting school to navigating the tricky waters of friendship and dating.



Growing up with autism: what the future holds



Despite or perhaps because of her vast body of knowledge for all things autistic Teresa Mebane is very concerned about what the future holds for her sons. “We had to set up a special needs trust guardianship power of attorney ” she says. “Its a really bad idea to leave a lump sum of money to people with autism. For one thing someone could easily trick them out of it. For another if they got all of that money they wouldnt qualify for services.” She shakes her head. “I thought Id done all of my grieving already but when we started thinking about what would happen to the boys .”


The Mebanes hope that Justin and Matthew will be able to share an apartment in a few years with the intervention of services as needed of course. For others whose children are not as high-functioning the relative independence of apartment life just isnt an option. The Autism Society has a list of potential residential options but for many parents like Judy Clark the nearest facility is many hours away.


Clark who with Mebane started the local autism society support group also founded ASAP (Autism Support and Programs 910-270-2890) a nonprofit created in 1997 to provide much-needed free services for autistic youth during the summer. Her 19-year-old son Remly is severely autistic and needs to constantly wear a restrictive vest so that he does not hurt himself. For the past eight years Remly has lived at the Murdoch Center a residential facility that is a six-hour round trip from the familys home in Hampstead.


After making “weekly trips” to see Remly for eight years and counting Clark was desperate to bring him closer to home. Her determination combined with the support of community members including Edie Hughes at TEACCH and Ruth Hurst a psychologist who is directing the UNCW Masters degree program in Applied Behavioral Analysis has led to the creation of a brand-new group home in Hampstead complete with horses chickens and organic gardens. Rainbow Farms is dedicated to providing residential support for children who are severely affected by autism right in their own community. “Remly will be our first resident and will come home May 11 ” Judy says. “Its a big undertaking and I have so many mixed emotions. Im elated Im exhausted and Im a little nervous.”


The incredible rise of autism diagnoses poses challenges for the system at every level from early intervention to adulthood and beyond. “School systems are trying their best to figure out how theyre going to handle this when bigger numbers hit the schools ” says Edie Hughes “when theres not 10 kids in a middle school but 25 and then theres high school and college.” Identifying children on the autism spectrum and intervening as soon as possible are essential to maximizing their potential for success.


No one agrees more than Rachel Berman a friend of Helayne Goldman whose five-year-old son Noah is also diagnosed with PDD-NOS. Helayne encouraged Rachel to pursue having Noah evaluated early on advice for which shes grateful. “People are afraid to say anything because theyre worried about offending others. When do you say something to a friend?” Rachel says. “If a friends kid is about to run into the street youd say something because theyre in danger. But when its something like this when do you speak up?”


Helayne Goldman echoes that sentiment. “Parents are afraid of the label. Just get your kid services. The diagnosis is the key to the door.”







Early intervention can make all the difference


Here are some red flags to look for during the first two years compiled from the Autism Speaks (www.autismspeaks.org ) and First Signs (www.firstsigns.org) websites.





  • No big smiles or other warm joyful expressions by 6 months of age or thereafter


  • Lack of response to name


  • No back-and-forth sharing of sounds smiles or other facial expressions by 9 months of age or thereafter


  • No babbling by 12 months


  • No back-and-forth gestures such as pointing showing reaching or waving by 12 months


  • No words by 16 months


  • No 2-word meaningful phrases (without imitating or repeating) by 24 months


  • Repetitive movements with objects and repetitive posturing with body


  • Unusual voice intonation pitch or rhythm

  • Any loss of speech babbling or social skills at any age






LOCAL RESOURCES



Screening Evaluation InterventionAnd Useful Information


Childrens Developmental Services Agency (CDSA)
Birth through age 3
(910) 251-5817


New Hanover County Schools Preschool Coordinator
Ages 3-5
(910) 254-4151


New Hanover County Schools Autism Liaisons
Laura Elliott (910) 763-5431 x 4296
Bette Greer (910) 763-5431 x 4295


*The school system offers an extensive array of autism-related resources including Web sites PowerPoint presentations and autism-related books videos and kits that can be checked out on loan. For more information email Bette Greer at [email protected] or visit http://www.nhcs.k12.nc.us/sped/ and click on the “autism” link.


Wilmington TEACCH
(910) 251-5700
http://www.teacch.com/regionalcenters/wilmington/welcome.html


Easter Seals UCP ECOS (Early Childhood Outreach Services)
(910) 392-7003
http://www.newhanoverkids.org/FECPEastersealsucpechoes.html


Family Support Network of Southeastern North Carolina
(910) 792-6133


Access Number for Developmental Disabilities Services
866-875-1757


Family Support and Programming


WRAPS: New Hanover County Autism Society Support Group
Melonia Anderson
(910) 762-6764
[email protected]
Join the online group at health.groups.yahoo.com/groups/WRAPS_Group/


Autism Society of North Carolina (ASNC)
800-442-2762
www.autismsociety-nc.org


Teresa Mebane ASNC
Parent Advocate Southeastern Region
(910) 332-0261
[email protected]


Open Doors Foundation and Summer Camp
www.opendoorswilmington.org


Autism Support and Programs (ASAP)
www.asapcares.org


Surfers Healing
http://www.surfershealing.org
Local contact: John Pike (910) 202-3312









BOOKS AND WEB SITES



Here are just a few examples of print and online resources that may be useful to families living with autism.



Web sites


Autism Society of America www.autism-societyofamerica.org


Autism Speaks www.autismspeaks.org
*Funding research on and raising awareness about autism


Wrightslaw http://www.wrightslaw.com/
*Special education law education law and advocacy for children with disabilities.


Do2Learn: Educational Resources for Special Needs http://www.dotolearn.com/
*Books learning tools games software and more for children with special needs


Autism Inspiration www.autisminspiration.com
*Online resource for parents and children with autism spectrum behaviors


Autism Support Network http://www.autismsupportnetwork.com/
*Connects families with support and resources for autism spectrum disorders


First Signs www.firstsigns.org
*Dedicated to educating parents about the early warning signs of autism and related disorders


DIR/Floortime Approach
Interdisciplinary Council on Developmental and Learning Disorders www.icdl.com


The Gray Center for Social Learning and Understanding http://www.thegraycenter.org/
*Website for Carol Gray and Social Stories


Speaking of Faith with Krista Tippett (NPR)
Being Autistic Being Human
http://speakingoffaith.publicradio.org/programs/beingautistic/index.shtml
*This is an incredible compendium of information including a downloadable broadcast of the radio program resources and selected writing on autism



Books


Different Like Me: My Book of Autism Heroes: Jennifer Elder (Jessica Kingsley Publishers 2005) *For children ages 8-12


Engaging Autism: Using the Floortime Approach to Helping Children Relate Communicate and Think: Stanley I. Greenspan and Serena Wieder (Da Capo Lifelong Books 2009)


The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder: Carol Stock Kranowitz and Lucy Jane Miller (Perigee Trade Revised Edition 2006)


Ten Things Every Child with Autism Wishes You Knew: Ellen Notbohm (Future Horizons 2005)


More than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder: Fern Sussman (Hanen Centre 1999)



 






Living With Autism: An Insider’s Perspective


Mary S. Mosely Performance Learning Center student and high-functioning autistic Ashley White has her own perspective on what it means to live with an autism spectrum disorder. “Sometimes people dont see that I have autism they only see the outside ” White says. “Some people just treat me differently. Sometimes its made me stronger and sometimes Im thankful other times I ask why me? We dont know the answers in life. Theres no person that knows everything except for God. What I think about autism is what I think and Im a very outspoken person.”



Though White has experienced her share of obstacles they havent given her pause. “I have a lot of dreams. I want to play basketball in college and play overseas. I want children. I want to have a good husband. I want to study psychology sociology art and criminal justice. I want to write poetry and publish my poetry.” She thumbs through her journal its pages filled with verse. “Im a beautiful artistic person with many goals that I want to achieve ” she says. “Im very serious about my education and I want to make a change in the future. Time will tell.”