Family Recipe

A young designer creates an ingenious set of cooking tools (with accompanying app) that enables her autistic brother to cook for himself.

Portrait by Winnie Au

Twenty-three-year-old Amanda Savitzky is the 2013 winner of the Next Generation Design Competition.

For most of us, preparing instant pancakes from a box is an easy, three-step affair. Gather and mix a few ingredients, pour the batter into a hot pan, flip. For Steven Savitzky, however, the process isn’t so simple. He was diagnosed with autism spectrum disorder (ASD) at 18 months and today, at age 20, still lives at home with his parents on Long Island, New York. For him, the kitchen is a distressing place. “It’s a sensory-rich environment, and that can be a barrier for someone with autism,” says Steven’s 23-year-old sister, Amanda Savitzky.

Cooking is a messy, chaotic affair, requiring both gross and fine motor skills and a level of attention and cognition that can elude many with this disorder. But on a rainy day in early April, Amanda and her parents, Lily and Bob, gathered in the family’s open kitchen to watch as Steven made one of his favorite foods—pancakes—by himself.

Steven navigated the kitchen using a colorful set of tools called Match Cooking Prep System for People with Autism Spectrum Disorder. Amanda developed the system in 2012 for her thesis project in industrial design at Syracuse University, and her pragmatic and thoroughly researched design won the $10,000 top prize in the 2013 Metropolis Next Generation Competition.

This year’s competition honed in on an often overlooked but pervasive design necessity in our culture: solutions that help those with a special need live an independent life. The guidelines specifically asked young designers to consider someone in his or her own life who could benefit from inclusive design.

The Match Cooking Prep System encourages adults with autism to gather, measure, and mix food in the kitchen using an integrated set of tools. Four measuring cups composed of easy-to-grip ergonomic handles come in four different shapes and colors that are equivalent to basic culinary measurements: a red pentagon equals one cup, a yellow square equals half a cup, a green triangle equals a third of a cup, and a blue circle equals a quarter cup. The cups line a thick wooden board where the corresponding shapes are cut into the base and each cup locks into place with a magnet— creating a satisfying click for the user. The device is reminiscent of a board puzzle for toddlers. Another wood board houses three prep bowls of varying sizes that can be used for mixing ingredients.

Courtesy Amanda Savitzky

The cups snap into place with magnets, like puzzle pieces.

The final component in the system is a Match iPad app, a platform for caregivers to translate common recipes into an interactive slide show for the person with ASD. The app breaks a recipe into a simple set of tasks that the user can scroll through and applies the colors and shapes of the Match measuring cups in place of the numeric measurements. It also allows the caregiver or teacher to upload pictures in order to customize the recipe. Many with autism have difficulty with generalization—for instance, they might not know how to get milk without seeing an actual picture of the milk carton in their refrigerator— so by uploading pictures specific to the user’s environment, the Match iPad app recipe prompts the user to walk through his or her own kitchen, step by step.

Amanda’s interest in designing for young adults with autism was sparked when she left for college in 2007, and thought about her brother still at home. “Most people go through typical rites of passage—college, developing friends, finding jobs, getting married—and this is not a natural trajectory for people with autism,” she says. Amanda focused on the kitchen because she wanted to offer her brother a sense of independence and accomplishment. “Cooking is important to our family,” Amanda says. “My mom, my older sister, and I cook together, but Steven could never participate in that. What’s more important than feeding yourself?”

While the Match Cooking Prep System may have been personal for Amanda, the problem she addressed is pervasive. The Centers for Disease Control and Prevention report that an alarming one in 88 children (one in 54 boys) is diagnosed with ASD, a disorder that affects all ethnic and socioeconomic populations equally. Most research funding and awareness campaigns center on early diagnosis and childhood treatment, and on finding ASD’s root cause. But thousands of young adults with autism, like Steven, are aging out of well-funded support networks such as public education systems, and entering adulthood with little to no support.

“This is the new frontier for design,” says Patricia Moore, an industrial designer and gerontologist who served as one of this year’s Next Gen judges. Moore is a longtime advocate for accessible design—she helped write the Americans with Disabilities Act— and in 1979, at the age of 26, she transformed herself into an 85-year-old to experience what it was like navigating the built environment as an elder. In spite of her vast experience with inclusive design, Amanda’s project surprised Moore. “It was really an ‘aha’ moment for me,” she says about realizing the sheer number of adults and caregivers affected by autism. “We spend much of our creative effort in building capacity with little ones and then it’s almost as if we abandon them once they age out.” A child with autism becomes an adult with autism, which can greatly tax caregivers who are also aging.

More than simply designing new kitchen equipment, Amanda aimed to develop a culinary infrastructure that would make the kitchen a safe environment and would emphasize independence for both the person with autism and the caregiver: “I was trying to build a system where the user can’t fail.”

Courtesy Amanda Savitzky

The measuring cups combine visual shapes and colors to coordinate with basic measurements.

At Syracuse, Amanda double majored in psychology and industrial design because she believed that any successful product needed to be rooted in a well-researched comprehension of autism. Natalie Russo, an assistant professor of psychology at Syracuse, helped Amanda understand how people on the spectrum process and integrate sensory information in the brain. “When developing individuals get pieces of information from two senses, like sight and sound, that person gets a boost of brain processing that helps connect the dots,” Russo says. “That doesn’t happen with autism.”

Russo’s research attempts to understand how the autistic brain processes sensory information, and she takes a “strength-based perspective” in this work. “Kids with autism can often detect differences better than we can; for instance, they might excel at Where’s Waldo?” she says. “We know their brains function differently, so how can we make the world more accommodating? I tend to like square pegs; I don’t want to fit them in round holes, and Amanda’s project fits nicely with that idea. She’s not saying that we need to teach kids with autism the way everyone else is taught; she’s asking how we can change what we provide to support the way that they are.”

Amanda had already learned a great deal about strength-based education for autism by watching her parents rear Steven. Lily and Bob helped pioneer the inclusion of autistic children in their local public school system, and they advocated for the use of applied behavioral analysis (ABA) with their son. ABA uses evidence-based, pragmatic lessons to teach a skill and reward success by breaking down activities, such as showering or getting dressed, into an orderly chain of steps known as a task analysis (think back to the recipe on that box of pancake mix). This task analysis can be turned into something known as a picture schedule, which is an illustrated version of the instructions. The caregiver then uses special prompts to help the autistic child learn each step of the task. There are different types of prompts: simple verbal instructions; modeling how something is done; or a hands-on touch that physically directs the person.

With the Match Cooking Prep System, Amanda built the task analysis and the prompts into a system for making food. First, she analyzed the steps necessary to gather and prep a simple meal—from washing hands and gathering ingredients to measuring and mixing—and then she considered the hurdles that might derail an autistic person in those steps. “I watched my brother trying to use a small measuring cup. He was holding it with a pincer grip and was shaking because he didn’t have the fine motor skill to grip that handle.” Those measuring cups were stackable to save space, but the stacking confused him, and the measurement designations meant nothing. “What does one over four mean to someone who doesn’t get it?”she asks. One of the first skills taught to an autistic child is matching colors and shapes. “I thought, why not make the measuring cups different shapes? So a quarter cup becomes a blue circle and a half cup becomes a yellow square.”

Portrait by Winnie Au

Steven, Amanda, Bob, and Lily Savitzky in their Plainview, New York kitchen.

Amanda spent hours walking through home stores researching kitchen equipment, and that’s how she hit on the idea of mise en place. “That’s a French culinary tradition used by some of the world’s best chefs to organize all of the ingredients first and then cook,” she says. “I knew that this technique would be awesome for someone with autism.”

People with autism thrive on consistency and routine, and research has shown that a visually organized workstation with spatial sequencing—where everything moves from left to right—helps. This informed the linear placement of the Match measuring cups and bowls on the wooden boards. “They can predict how things work, and when they get a new task they feel confident because they understand the basic structure,” Amanda says.

Throughout her design process, Amanda consulted with Brad Richards, an autism expert who runs a group home for adults with ASD near the Savitzkys’ house on Long Island. Richards coordinates cooking classes for the adults in his home and he says the Match Cooking Prep System succeeds in decreasing reliance on the caregiver and increasing independence for the individual. The system has other implications as well. “A frequent side effect of ASD is a picky palate, and nutritional deficiencies can become an issue,” Richards says. By developing the skills necessary to feed oneself, rather than constantly being served food, a person “becomes more interested in the food and increases the types of food that they will eat.”

The Match Cooking Prep System sparked a robust discussion among the four judges of this year’s Next Gen competition. At first, the seeming simplicity of Amanda’s design raised questions among them, but once the totality of her idea was understood in context, it became the clear frontrunner. “Amanda did what every good designer should do: step back and question some fundamental assumptions,” says Gianfranco Zaccai, president and chief design officer of Continuum and a judge in the competition. Zaccai stressed the importance of a product capable of coming to market quickly. “There have been lots of utopian ideas about how to create an ideal environment for a person with a disability, but people have to be able to live in a variety of environments and they have to be able to afford it, so coming up with a simple set of tools is a lot more meaningful.”

Keeping it simple and affordable was key to Amanda’s design. “Caregivers can’t afford expensive solutions,” Amanda says. “I knew I wanted a practical set of tools that could be created now. My professors challenged me and I would always chal- lenge them back. It couldn’t be the ‘kitchen-of-the-future’ with a $10,000 Microsoft Surface tablet. It had to be affordable, small, and practical.”

Courtesy Amanda Savitzky

When designing the iPad app for Match, Savitzky reminded herself that the software had to work for different people. "I was mindful that the system had two user groups: the person with autism and the caregiver."

Amanda plans to use her Next Gen winnings to further develop the prototype and help bring the product to market. Marsha Maytum, partner in the San Francisco–based firm Leddy Maytum Stacy Architects, hopes that happens. Maytum’s firm designed Sweetwater Spectrum in downtown Sonoma, California, which became the nation’s first community built specifically for autistic adults when it opened this year. “This would be an incredibly useful product and I can see this being put to good use at Sweetwater,” Maytum says. “It’s notable that Amanda is handling the tactile, in-the-moment world, but also creating technology that allows it to be customized in ways that are most successful to individual users.”

The judges note that the Match Cooking Prep System has implications well beyond autism, including supporting aging Baby Boomers with increased cases of dementia. “This would be helpful for anyone with traumatic brain injury, dementia, or someone who just had a stroke,” Moore says.

Back in the Savitzkys’ kitchen on Long Island, Steven’s family, along with Brad Richards, cheer him on as he successfully measures pancake mix and then water into the appropriate cups and pours each into the Match prep bowls. Lily sits in a chair nearby and pretends to tie her hands behind her back. “I cannot help him, he’s going to do this all by himself!” she says. Lily has spent hours in the kitchen with Steven practicing the pancake prep with the prototype system, and her two decades of hands-on caregiving make it hard to now sit back and watch. “I’m a mom,” Lily says. “I’m so eager to jump in and help him. I don’t want him to fail.”

Steven is meticulous and focused, completing each step and knowing to scroll to the next instruction on the iPad. Everyone claps and gives encouragement with each success, but as he reaches for an egg the room falls silent. Steven hesitates momentarily then cracks the egg expertly into a bowl. He looks up and says: “How am I doing?” Everyone bursts into applause. Lily has tears in her eyes: “You’re doing great. I’m so proud of you.”

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Jun 9, 2013 04:37 pm
 Posted by  Kim Marie

Thank you, thank you, thank you! Working with the populations of middle school, high school and young adults with ASD for whom our goal is always independence, I am so excited about this idea! Amanda, it is pure genius! I pray you are able to develop the products soon :) be sure to add schools to your lists of potential customers! We would love to teach our independent cooking classes using your stuff :) Wow and congratulations!
Kim Marie

(Oh, and let's go ORANGE!)

Jun 15, 2013 02:25 am
 Posted by  Ms. Mary

This idea is brilliant and useful beyond autism. Simple, with brains behind it is glorious, isn't it?

Jun 15, 2013 09:30 pm
 Posted by  pfd123

I think this is wonderful. As an Occupational Therapist who works with all ages..and those with many disabilities..this would be SO useful! Hope it becomes a reality real soon!! Wish we could help you test them!!

Jun 19, 2013 03:46 pm
 Posted by  Lyntilla

Put this idea on Indiegogo, immediately!!! I want this for my son! Let me throw money at you for a prototype. The bowls seem kind of small. How big are they?

Jun 19, 2013 05:31 pm
 Posted by  TKforBen

Oh, I NEED this for my 22 year old son!! He has mastered many, many life skills, but cooking has proved to be a hurdle that I have struggled to teach him. Your article is indeed correct when it states that many issues with cooking arise with poor gross and motor skills!!! My son struggles to hold, cut, pour, and mix foods - I not only WANT this system for him, I NEED this system for him! I, too, would pay for a prototype!! PLEASE, PLEASE, do all that you can to get this system on the market! I have saved this article and will be watching for the launch of your product!! I'll be the first in line!! All my best to you and your family!

Jun 27, 2013 11:04 am
 Posted by  livingwithadhd

People with ADHD would love this. And the elderly or those with traumatic head injuries.

You are brilliant.

Jul 6, 2013 08:32 pm
 Posted by  Trishasmom

This would be awesome for my daughter with Down Syndrome/Autism, sensory integration disorder and hearing impaired. Amazing! I would also like to purchase this for my daughter.

Aug 28, 2013 05:30 pm
 Posted by  The Pioneer Mom

What an amazing idea! I have a son with ASD and think this would do so much more than just guiding him to cook. It will help with motor-skills, math, organization and task completion. I would LOVE to be the first to buy this!! If you need a focus group, I would be honored to try this product and share it with my organization! Again, fantastic concept, Amanda!

Leslie Marin
Leslie@thepioneermom.comwxdt

Sep 8, 2013 08:06 am
 Posted by  ASSOCIAZIONE AUTISMO CUAMJ

Hi all.
Dear friends, the writer Mariapia Vernile, President of the Association for autism CUAMJ with headquarters in Taranto-Italy, send this plea with the hopes of getting positive responses. Our Association for autism CUAMJ submitted the candidacy of a 25-year-old boy with autism to participate in the International Prize of 4 people with autism to be held in Canada, from 01 to October 6, 2013.
For the first time Italy will represent autism around the world with this amazing guy who communicates through song accompanied by MOM and dad. We sent of his videos with his interpretations with augurs well to win a prize. We would be happy to participate personally at this family event, but unfortunately lack the funds for travel and logistical costs.There would be anyone willing to help us? We will dedicate the award to the benefactors. Another initiative that we propose for the 2104: looking for sponsor since June to September 2014, in Italy, we are organizing "playing by heart" in support of autism.The events will be held in Taranto, Turin, Rimini and Messina in order to sensitize families and institutions to work together. Autistic people have so much to teach us! For details contact Mariapia Vernile + 39 334. 8648212, mail mariapia.vernile@alice.it www.progettoisha.it

For accurate information about this event in Canada, we have indicated the link event organisers: the President of the Canadian Association of hip, Mrs. LEO GREGORY and her husband CHARLIE COLLURA, naturallyautistic@gmail.com

Here's the email received from
naturallyautistic@gmail.com

Italian version.
Ciao a tutti.
Cari amici, la scrivente Mariapia Vernile, Presidente dell'associazione per l'autismo CUAMJ con sede in Taranto-Italia, invia questo accorato appello con la speranza di ottenere risposte positive.. La nostra associazione per l'autismo CUAMJ ha inviato la candidatura di un ragazzo di 25 anni con autismo per partecipare al 4° premio Internazionale delle persone con Autismo che si terrà in Canada, dal 01 a 6 ottobre 2013.
Per la prima volta l'Italia rappresenterà l' autismo in tutto il mondo con questo incredibile ragazzo che comunica attraverso il canto accompagnato da mamma e papà. Abbiamo inviato dei suoi video con le sue interpretazioni con auspicio di vincere un premio. Saremmo felici di far partecipare personalmente all'evento questa famiglia, ma purtroppo mancano i fondi per il viaggio e le spese logistiche. Ci sarebbe qualcuno disposto ad aiutarci? Il premio lo dedicheremo ai benefattori. Altra iniziativa che proponiamo per il 2104: si cercano sponsor poiché da giugno a settembre 2014 , in Italia, stiamo organizzando" LE partite del Cuore" a sostegno dei progetti autismo .Gli eventi si terranno a Taranto, Torino, Rimini e Messina, al fine di sensibilizzare le famiglie e le istituzioni a lavorare insieme. Le persone autistiche hanno tanto da insegnarci! Per i dettagli contattare Mariapia Vernile + 39 334. 8648212, mail mariapia.vernile@alice.it www.progettoisha.it
Grazie a tutti.

Per informazioni veritiere sull'evento in Canada, abbiamo indicato i link degli organizzatori evento : il Presidente dell'associazione canadese dell' ANCA , la signora LEO GREGORY e suo marito CHARLIE COLLURA, naturallyautistic@gmail.com
ecco la mail ricevuta da
naturallyautistic@gmail.com

Dear Award Nominee:
There are only 20 delegate packages remaining for the 2013 INAP & Festival Convention Awards
Final Opportunity to purchase a Full Delegate Package $ 200.00
http://www.naturallyautistic.com/
Individual event tickets (Opening Production, Awards Ceremony and Gala Dinner) can be purchased online: http://www.naturallyautistic.com/2013-awards-convention-festival/2013-opening-ceremony-awards-ceremony-gala/
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http://www.naturallyautistic.

Sep 8, 2013 08:09 am
 Posted by  ASSOCIAZIONE AUTISMO CUAMJ

Letter of introduction CUAMJ Association-SOUTHERN IONIAN AUTISM UNIVERSE CENTER-NON-PROFIT ORGANIZATION of LAW


The Association CUAMJ was founded in 2005 for the necessity of disseminating good practices inherent in autism and related conditions. committed to the dissemination of methods of application for rehabilitation and social recovery of these people. Supports projects of scientific research for medical genetics-Biochemistry and molecular biology. The Association is formed between parents, family members and caregivers of people with autism and related disorders to mental retardation. Is Autism the syndrome identified by definition formulated in international classifications DSM (the Diagnostic and Statistical Manual of Mental Disorders) of the American Psychiatric society and ICD (International Classification and Disorders) of the World Health Organization. It is accepted that autism is the result of a brain dysfunction rather than a disorder of psicogenetyc origin.

The Association CUAMJ has democratic structure and not a non-profit, pursues exclusively aims of social solidarity. Promotes the specialized education, health and social assistance, scientific research, training of practitioners, civil rights for autistic people and with generalized developmental disorders so that their guaranteed the inalienable right to a free life and protected, as much as possible independent in respect of their dignity and of the principle of equal opportunities.
Play and organize volunteer activities in accordance with Italian law 266/91, by encouraging interaction between families and enhancing therapeutic potential and the importance of their fundamental educational component. Support and facilitate the establishment and activity of "teams" and cooperate with them in order to enable studies on autism and related disorders to mental retardation, etiologies, therapies, diagnosis and disseminate the knowledge acquired in the fields of health and social assistance, in formal education and professional and direct interventions to the integration in school, in work in sport and in a social context.
Establish collaborative relationships, connections, and accreditation agreement with public institutions (ministries, regions, municipalities, local authorities, asl, nursing and research institutes) and individuals, in order to promote educational activities, sports, health, rehabilitation, employment, in order to have the necessary means to the attainment of social objectives.
Raise awareness and support the formation of
workers and volunteers, through courses, conferences and publications in accordance with official definitions about autism and mental retardation cones
search results.
Promote the establishment of daytime facilities and/or residential, rehabilitation/medical order, social welfare/even so between their brother, suitable to meet the needs of autistic and mentally disabled.
Establish a network with Italian and foreign associations having the same objectives, in order to support the services provided by them for the benefit of autistic people and mentally disabled people and to encourage the exchange of experiences and achievements.

Unfortunately it is a sad reality that the cases of autism spectrum disorders are on the rise, but it is also true that it is thanks to the timely diagnosis that we can intervene to help autistic people and their families.
The rehabilitation process is carried out through three basic strengths that are:
-the family
-ASL OPERATORS
-Institutions present in the territory: municipality, province, regions, districts, schools, voluntary associations

All these reference points revolve around a single goal: to make MAXIMALLY AUTONOMOUS our boys IN difficulties including starting towards an autonomy that make them hear PEOPLE LIVES.

The Association collaborates with various associations and Institutional national and International Bodies in order to create a network of operations with the best centers specialize in the diagnosis and treatment of AUTISTIC DISORDER, mental retardation and related conditions.

External collaboration
The CUAMJ Association collaborates with IRCCS Oasi Maria Santissima di Troina (Enna Italy), the Center specializes in the diagnosis and treatment of mental retardation in età evolutiva and regression. http://www.irccs.oasi.en.it/

OASI di Troina, recognized by the Ministry of health, proposes the creation of some of its satellites in order to reduce the waiting lists of patients who go there. Offers the possibility to train and educate families, medical and rehabilitation staff (through the computerised system, OASINET-distance education with computer workstations at installation
home or rehabilitation facilities) about the new rehabilitation techniques of people with mental retardation and autism.

Collaborates with the Centre for Genetics, IRCCS CASA SOLLIEVO DELLA SOFFERENZA of San Giovanni Rotondo and directed by Doctor Prof. genetist Leopoldo Zealante and with his collaborators, biologists Dr. Leonardo D’Agruma and Dr.Massimo Carella. http://www.operapadrepio.it/it/content/blogcategory/51/109/

Collaborates with pedagogical study of doctor. Claudia Lerz of Cagliari,ITALY, special teacher/educator for autism with u.s. training for the application of the ABA.(APPLIED BEHAVIOR ANALYSIS) inserted into the team of Prof. David LUBIN-founder of the CHILDREN's Center for development and Behavior site in Weston, Florida-USA, Center specialized in application and study of a therapeutic protocol based on behavioural ABA techniques.(APPLIED BEHAVIOR ANALYSIS). The sister of an autistic boy in 42 years. The same dott.ssa Lerz imported in Italy the LUBIN by applying it in many Italian regions getting good results from small patients entrusted to her.

The Association is in contact with EPFL-SWISS FEDERAL INSTITUTE of TECHNOLOGY of LAUSANNE-Department of BRAIN MIND INSTITUTE engaged in research study to understand the social difficulties of autistic people or with Asprger's syndrome through the use of psychological tests and through functional magnetic resonance imaging that allows you to follow the route of the gaze. http://bmi.epfl.ch/

Collaboration with the specific technical table for autism started in June 2011 by Dr. Vizioli, contact the Health Department at the Ministry for equal opportunity.

Active collaboration with all major associations for autism throughout the national territory and abroad.

Collaboration with the Associazione Giovamente di Salerno, responsibility of the Dott.ssa team Rose Mandia, Educationalist and expert Counselor in infantile autism.

Moulder in specific courses for autism for the proper care of autistic people//gestione organization of Socio-Educational Centres/rehabilitation, Social Farms.

Training

The formation of families and medical rehabilitation and is the basis of the future quality of life of these people, which, if timely help from new and different rehabilitation techniques, can achieve sufficient autonomy, and it is my commitment to contact and look for trainers who are able to meet these needs

In November 2004 the Association organized the first training course with prof. Theo Peeters, founder of Opleinding Centrum Autisme of Antwerp (BE) is currently one of the best European experts specialising in study for autism TEACCH model and application (individualized educational strategies). http://en.theopeeters.be/
In April 2006, 2° AUTISM training and EDUCATIONAL APPROACH by Prof. Theo Peeters, Director of Opleiding Centrum Autisme of Antwerp (BE) according to the TEACCH (treatment Individualized Educational) intended as a political project: American TEACCH program, an acronym for "Treatment and Education of Autistic and Communication Handicapped Children", which is not as generally means only one method of educational intervention, but a program first of all "organizational and political". The term "TEACCH Program means indicate the organisation of departments that operate for the benefit of autistic people and includes a comprehensive care at every stage of the development of the individual with the aim of reaching the best possible rehabilitation and social integration through the implementation of a UNIQUE CASE MANAGEMENT in collaboration the family and Public/Private institutions present in the territory.

In 2007 and 2008, in collaboration with the CSV of Taranto, were organized two training courses for volunteers about the approaches to autism and Non-verbal communication with people with Autism . In 2008, they organized TECHNICAL specialization courses of conduct by dott.ssa Claudia Cagliari Lerz of Cagliari (Italy) supervised by Dr. David Lubin of Miami (Florida) and started the implementation of the Protocol with some families. "DISCRETE-TRIAL ABA AUTISM.

Organization of presentation of genetic research to study the causes of autism and mental retardation and its Randomization of the families to be subjected to withdrawals by medical genetics service at the hospital "Casa Sollievo della Sofferenza" in San Giovanni Rotondo (Foggia-Italy ): In the presence of neurological symptoms or obvious dysmorphism, chromosomal rearrangements can be suspect even with negative karyotype; should, if possible, conduct a survey using array-CGH.
Finally, molecular targeted investigations conducted on individual genes (MECP2, HOXA1 and PTEN) just in case the Autism phenotype observed is in line with the pathophysiological role of the gene in question.
Main aim of the research project conducted by the medical genetics service of IRCCS San Giovanni Rotondo, is to offer the possibility to perform protocol aCGH labeling Protocol and analysis on patients with primary or idiopathic autism (90% of cases) and on patients in which Autism is complex and syndromic genetic cause unknown (10% of cases). The patients recruited into this kind of analysis must have already carried out, with negative results, both the standard karyotype analysis and molecular investigations for suspicion of X-Fragile.
The Protocol aCGH labeling Protocol is an innovative method to detect the presence of duplication or micro or small riarrangimenti genomic microdeletions in human genome with a resolving power that varies between 1 MB and 1 KB.
A second objective of this project is the possibility that the medical genetics service at the IRCCS hospital "Casa Sollievo della Sofferenza" of San Giovanni Rotondo (Foggia- Italy) becomes a diagnostic center of excellence to perform such investigations simultaneously innovative molecular point of reference not only for the Region but also for the other regions.
The SNP 6.0 array were recently validated for use in molecular cytogenetics, and within a few years might have the IVD mark needed to run diagnostic tests certified.
Considering the resolving power of the method that you will use and a large number of CNVs in the human genome, it necessitates the proband DNA analysis and that of his parents in order to highlight de novo CNVs which appear in only the propositus.
The benefits of implementing this project and the methodical application of Protocol aCGH labeling Protocol will allow:
1. propose and validate a genetic diagnostic Protocol to suggest to patients with autism spectrum disorders with unknown causes;
2. to be a valuable diagnostic tool in cases where both the karyotype which the survey for X-Fragile are both negative. Please note in this regard that, from past literature and data from different clinical evidence shows that genetics plays a very important role in the determinism of autistic disorder;
3. to suggest directly that test in the presence of primary or secondary autism accompanied by facial dysmorphology or obvious neurological symptoms, because in these cases, you have to suspect the existence of chromosomal rearrangements are often cryptic and not easily noticeable through common cytogenetic techniques;
4. to promote the knowledge and possible identification of new genes involved in disease.


In 2010 the active Collaborator with the social services of the municipality of Taranto for opening public centers for 2 People with Mental disorders.

Drew up guidelines for comprehensive care of people with Autism and/or related disorders and their families to the region of Puglia.

Winner of regional and national Calls for targeted projects for autism. ISHA Project - INTEGRATED SYSTEMS For The Handicap with Autism -, with reference to the province Puglia of Taranto, building a map of individuals with autism so that they are clear and detailed macro-characteristics of the phenomenon;

Characteristics of social and family contexts in which such persons live,
Public institutions that are in charge of such persons;
Other institutions/public/private Organizations are referenced;
Typology of requests for help that come directly from families or institutions/organizations.

With reference to the province of Taranto, identify:
all persons who currently have an active role in the processes of care, support, education, or any other form of support; the services offered and their mode of access by users;
methodological addresses used by such persons in the treatment of subjects with autism;
the systems used by such persons for recording, storage, management, transmission of information (personal data, diagnosis, interventions and their outcomes, etc.) users who access the services;
the existence of any joint projects and/or networking between participants themselves and/or with different subjects (at the regional, national, international) with similar goals of care, support, education, etc. of individuals with autism.
Among the actors involved in the project (ATS subjects and project partners: Municipality of Taranto social policy Section, ASL Taranto, ARES PUGLIA , Istituto Professionale di Stato "Francesca Saveria Cabrini" di Taranto) and between other parties who wish to make their contribution to the project to:
Define methodological common addresses shared where the e different subjects will recognize and use in the treatment of autism;
Develop and share procedures for an integrated approach to the assessment, care and for the "sole Manager" and co-ordinated; signing of a memorandum of understanding with public and private institutions of the territory for the optimization of public and private services. . Given the nature of the project, you can easily duplicate in other Italian /International provinces.

The Association represents Autism at Ministerial and Technical tables. Last but not least, present in the Chamber of Deputies supporting the Bill for autism http://francabiondelli.blogspot.it/2013/03/dl-biondelli-antezza-norme-per-la.html

Autism incidence cases in the Puglia region.

By Istat estimates in Puglia region there are 30.000 people with Autism or with related conditions and is-unfortunately-in increasing, ignoring even the reticence of some less affluent families that conceal the reality of having an autistic child. Currently affects 1 /88 child born, (established by the DSM (Diagnostic and Statistical Manual of Mental Disorders) and is a phenomenon unfortunately still not ignoring growing reticence of some families less the haves that conceal the reality of having an autistic child.

Comes without saying that nationally we need urgent measures of adaptation of social health-rehabilitation facilities exist in the territory. Consider then the long journeys of hope beyond their regional boundaries for the diagnosis and care of patients in discussion (passive Mobility), consider the psychological damage arising for dropping (even for long stay) of their family and environmental affections and not least, the economic damage.

In light of the circumstances, we can actually establish that all negatively on working system, since employers must replace absent employees (with a considerable economic damage,) not to mention the damage it suffers health to treat not only the patient suffering from the disorder, but also the patient's parents, whom, as is human and natural fall into a depression continues to lack real supports and under an "AFTER US" .... The darkness. At a glance implement true TEACCH treatment. American TEACCH program, an acronym for "Treatment and Education of Autistic and Communication Handicapped Children", which is not, as generally refers to a method of intervention, but a program first of all "organizational and political". The term "TEACCH Program means indicate the organisation of departments that operate for the benefit of autistic people and includes a comprehensive care at every stage of the development of the individual with the aim of reaching the best possible rehabilitation and social integration through the implementation of a UNIQUE CASE MANAGEMENT in collaboration the family and Public/Private institutions present in the territory.. You need to change the global vision for taking charge of autistic people and their families; meanwhile, we must dispel the notion that autism is a disease. Autism is not a disease but a condition marked by severe quantitative and qualitative impairment of life, social life etc. Well if is therefore that the autistic person should not be treated as a PSYCHIATRIC patient, but must have around if you're a company and people who know how to integrate into everyday life. This process of integration is achieved through the Organization of a network created by people and services; a MULTIDISCIPLINARY team of medical and rehabilitative, which rotates from the family, from the schools and from the territory. Inculcate the defined NORMAL that integration is possible only if you work on a network using the human resources.

The removing social educational interventions and rehabilitation that take advantage of cognitive behavioral approaches. Working with early and targeted intervention means making new blood of breath for the same autistic people and their families, but also all workers, even in economic terms. Growing demand for more screening centers, psychological and educational interventions, aggregation, work, education, residency and breath to allow these people to defining itself and learn to live. Create innovative accommodations lasting and stable for de- institutionalization of autistic people relating to mental health services.
Our goal is to create small residential Community where our children with DISABILITIES, can SLOWLY GET USED to live alone (followed by specialized teams), and start to create small craft enterprises of agro-food, type,
in bookbinding, carpentry, pottery, theatrical activities, etc., and to ensure that they live only by mere INSTITUTIONAL ASSISTANCE.
If all together, public and Private institutions, companies, individuals, family, foundations, BANKS, etc., contribute even minimally, the project "TARANTO CITY OASIS ' open ' in favor of disabled people, would be a showpiece for the Puglia region

It is up to us families assert rights INVIOLABLE for our dear.!!!!!

I will finish this mine, with the hope of having sufficiently explained my thoughts-in action
Waiting for more contacts and cooperation, I hope my dearest greetings


The President of the Association CUAMJ


Mariapia Vernile
Sede Legale: Piazza Alda Merini, n. 12/F, 74122 Taranto -Italy

Cell. +39 334 8648212 fisso +39 099 7721964
www.progettoisha.it - www.facebook.com/ centro.u.autismo
Codice Fiscale 90157980732

Dona il tuo 5 per MILLE A:

Associazione CUAMJ -codice fiscale 90157980732

Per donazioni Liberali: COORDINATE BANCARIE ASSOCIAZIONE C.U.A.M.J. (CENTRO UNIVERSO AUTISMO MERIDIONALE JONICO)
PRESSO BANCA PROSSIMA- Numero CONTO CORRENTE: 0074 373
IBAN : IT75 I033 5901 6001 0000 0074 373


La presidente dell’Associazione CUAMJ

Mariapia Vernile

Sede Legale: Piazza Alda Merini, n. 12/F, 74122 Taranto –Italy
Sede Operativa: C/O Istituto Professionale di Stato “Francesca Saveria Cabrini”, Via Dante Alighieri, n.119- 74121 Taranto-Italy

Cell. +39 334 8648212 fisso +39 099 7721964
www.progettoisha.it www.facebook.com/ centro.u.autismo

Dona il tuo 5 per MILLE A:

Associazione CUAMJ -codice fiscale 90157980732

Per donazioni Liberali: COORDINATE BANCARIE ASSOCIAZIONE C.U.A.M.J. (CENTRO UNIVERSO AUTISMO MERIDIONALE JONICO)
PRESSO BANCA PROSSIMA- Numero CONTO CORRENTE: 0074 373
IBAN : IT75 I033 5901 6001 0000 0074 373

PAVENTIBUS VENTI! (Seneca)
NON ESISTONO VENTI FAVOREVOLI PER CHI NON SA DOVE ANDARE

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