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Roses for Autism

February 16, 2012 Leave a comment

The mission of Roses for Autism is to grow independence in the business world through a replicable Autism training and employment program integrated in a successful and sustainable rose business. The vision is to demonstrate a replicable working model for inclusive transitional employment for youth and adults on the Autism Spectrum. In 2011, Autism Speaks awarded $25,000 to Roses for Autism through its Family Services Community Grants program.

Roses for Autism is a unique venture, combining training and employment of people on the autism spectrum with the growth and sale of flowers. This is a business that not only employs people; it employs people who have an unacceptably high level of unemployment. The project location is Pinchbeck’s Rose Farm in Guilford, CT.

Roses for Autism is unique, integrating three businesses in a single enterprise:

  • Employment and training for people with Autism Spectrum Disorders
  • Agricultural – Raising flowers in the country’s largest free-standing glass greenhouse
  • Sales – Rooted in autism cause-based marketing

Over the course of the grant period, we have learned:

  • It is not only the lack of job skills, but also the lack of social skills that hamper success in the workplace.
  • It takes time to successfully develop individual strategies for participants and transfer them to general work environments.
  • It is essential to offer other resources to participants outside of employment strategies.
  • Participants gained confidence, school grades improved and participation in the program is having a positive impact on people’s lives.

Demonstrating success:

Incidental reports from families, schools and program staff noted that some participants are reporting and/or exhibiting increased confidence, better grades in school and motivation to be more social. In some instances, participants are forming friendships with peers, staff and/or customers. One unexpected and extremely exciting success is the young man who after being driven back and forth to the program by his mother, learned to navigate public transportation to get to work independently. Desiring still more independence, he recently secured his driver’s license – a goal that was beyond his wildest expectations. He is now working toward saving his money from his job at the rose farm to buy a car.

Roses for Autism currently employs eight individuals on the spectrum that are working in an integrated environment for competitive wages. During 2011, 290,500 roses were sold.

For more information, please visit www.rosesforautism.com!

The grant cycle is officially open on February 17.

To learn about our newly announced RFA for Family Services Community Grants, please visit http://www.autismspeaks.org/family-services/grants/community-grants

A Note from AutismCares Recipients in Georgia

February 9, 2012 3 comments

Here is a letter from one of our AutismCares recipients. AutismCares provides grants for individuals with autism spectrum disorders during times of crisis or unplanned hardships.

Thank you so very much for this award! I am blessed and so touched by your generosity! We were so blessed to be provided our rent last month, to keep us from being evicted but we have some other pressing needs that we could apply this to. It has been such a discouraging few months considering my husband has had several interviews but with the huge competition that exists, he hasn’t secured a job yet. You have no idea what a relief this is for our family, as we have struggled tremendously over this past year and a half, just barely surviving. It is because of the gracious and wonderful people that make up organizations like yours that give people hope of a better tomorrow, in the midst of a terrifying storm.

I want everyone out there to know how much of a blessing this gift is to my family and that it is because of people like you, and those who come together and build an organization, that rebuilds a sense of community, support and understanding for those who’ve lost the “village” that was supposed to be there to help you rear your children. Again, I have been blessed so deeply for your kindness and the support I didn’t know my family had in time of crisis, you have kept a family from drowning! I can’t say enough how comforted I am right now!

Sincerely and God Bless,

Anna, Seth and family

Somebody Stole My Name! (but we’re friends now)

January 26, 2012 2 comments

This is a post by Dr. Scott Standifer, a Clinical Assistant Professor for the Disability Policy & Studies office (DPS) at the University of Missouri. He is the author of Adult Autism & Employment: A guide for vocational rehabilitation professionals, and the organizer of the Autism Works National Conference, March 6 & 7, 2012 in St. Louis, MO.

The first call came in 2008, just after I started work on the first Autism Works National Conference: “Hi Scott, this is Tracey with Autism Works…” the woman said.  “But, wait,” I thought, “That is MY project’s name…” Actually, I don’t have a copyright on the name, so it is legal for others to use it too. Still, it felt likeTracy stole my name.

Since then, I’ve had that same “Somebody stole my name!” feeling twice more as I discovered other groups with the same name. Who these groups are, and what we are each doing to advance autism employment, is a nice sample of some of the varied and vibrant approaches to this important field. Tracey, for instance, turned out to work for Community Gatepath, a Community Rehabilitation Provider (CRP) in California that had been given a grant for a special program serving adults with autism. They called it Autism Works.

A few years earlier, as part of my job helping state vocational rehabilitation agencies in four Midwestern states, I had discovered a profound lack of information about autism in the vocational rehabilitation community, and a similar lack of information about vocational rehab in the autism community. I ended up writing a reference guide on autism employment and starting the Autism Works National Conference.

Six months later, I found another Autism Works, this time in Minnesota. This one is a non-profit group that promotes not only employment, but also life planning and independent living for adults with autism. It was founded by Melissa Kenig-Davis, the parent of a young adult with Asperger’s Syndrome. Parent advocates are an important group in autism employment. They have started some of the most exciting autism employment projects in corporate America, including Randy Lewis at Walgreens and Heather Davis at TIAA-CREF. In Connecticut, parent Jim Lyman started Roses for Autism. In Missouri, parent Kate Duffy teaches job-seeking-skills courses for autism and has co-written a book on employment withTempleGrandin. Heather Davis, Kate Duffy, and Melissa Kenig-Davis were all at our 2011 conference.

And then it happened again – last summer, I found a group called Autism Works UK.  Peter MacDonald is the Director of Autism Works UK, which is part of a business movement spearheaded in the U.S. by Aspiritech in Chicago. These businesses hire adults with Asperger’s Syndrome to test computer software. Apparently, when innovative programmers finish their software masterpieces, they often don’t feel like going back to recheck every function and explore every possible input for mistakes. So they hire software testers. For us neurotypicals, software testing can be terribly boring; it requires lots of repetition, documentation, endless lists, etc. But for Aspies, routinized work like this is often appealing and easy. Aspiritech and Autism Works UK don’t market their services by pleading, “Please help these poor young people.” Instead they say, “Our unique workers do a better job than anyone else.” WOW! What an empowering message!

Peter MacDonald and I had a long talk about the challenges and opportunities of this exciting business model. Peter, Aspiritech, and folks from three similar companies will be on a panel at our Autism Works National Conference in March.

So even though each of our groups picked the same name, we are all engaged in different and complementary projects. Discovering these other Autism Works has taught me interesting new things about career options for adults with autism.

Lately I’ve had the feeling that somewhere, someone else is getting ready to choose the Autism Works name for some new kind of employment project. I can hardly wait.

Camp Good Times Baker Summer Camp

January 25, 2012 1 comment

Blog by Beth Weiner, Camp Director of Camp Good Times in Charleston, South Carolina, which received a grant last year:

The 2011 session of Camp Good Times of Charleston, a recipient of an Autism Speaks Baker Summer Camp Scholarship Fund, was activity oriented, fun, child centered, and safe for the 130 children who attended this past June. Our camp includes not only children on the autism spectrum, but neurotypical peers who come to camp, have fun, be campers and friends with everyone.

The highlights from our 12 days include…swimming everyday, field trips to area water parks, malls and movies, a visit from a Therapy Dog group, Spray Play with the local firefighters(which was really cool!), The OT class from The Medical University of South Carolina joined our staff for a day, a “Valentines Day” party, summer solstice party for our younger campers and parents, Yo-Music, a blend of Yoga and Music, art, sports, computers, singing and dancing, piñata party, pizza and the campers favorite part of the day…SNO_CONES!

Below are some of the individual campers who benefited from the Autism Speaks Baker Summer Camp Program grant:

Four of the children who attended live in a group home. The three girls, Jen, Dee Dee, and Monique have been in a residential group home for girls with ASD for as long as I have known them. Ahmad has been a camper for many years, and has only recently been placed in a group home run by the same organization. I was fortunate to be able to offer the Baker Summer Camp Scholarship opportunity to these children, since other public funding was not available and they would not have come to camp with out it.

Two of the campers who attended through the generosity of Autism Speaks had to have their own personal assistant due to medical needs. These families were able to get financial assistance for the medically necessary aides, but there was no funding left for the camp fees. I know these families want their child to have a typical summer camp experience and the respite provided them was much needed. The Baker Summer Camp Scholarship was able to provide that.

The other campers and families also have challenges throughout the school year. I have gotten to know these families very well, all of the camp families, and the fun experience that Camp Good Times provides their child and the respite provided the families is what they value. For more info and pics…visit www.campgoodtimesofcharleston.org!

Social Lives and Teens with Autism

January 24, 2012 27 comments

This is a blog post by Lisa Goring, Autism Speaks Vice President, Family Services.

A recent research study funded by Autism Speaks reached a conclusion that probably would surprise few in our community: Teens with an autism spectrum disorder (ASD) often face major obstacles to social life outside the classroom. Given that one of the hallmark features of autism is impaired social interaction, it’s not hard to imagine why teens on the spectrum typically have difficulty making friends and participating in social activities, especially outside of school.

Unfortunately, social challenges are often considered the norm for kids growing up with autism. But this needs to change. The good news is that change is underway. Innovative approaches – ranging from group golf lessons to Girls Night Out – have been launched across the United States with the support of Family Services Community Grants from Autism Speaks. Their goal is to improve the socialization skills of teens and young adults with autism.

The research study was originally funded by Autism Speaks as a Pilot Grant in 2010 and then published in the November 2011 issue of PLoS One by a team led by Paul T. Shattuck, Ph.D., of Washington University, in St. Louis. The study analyzed data collected from a large number of adolescent students with autism enrolled in special education.

When compared to students with other special education needs, such as learning disabilities, mental retardation* and speech-language impairment, teens on the spectrum are significantly less likely to see friends out of school (43.3 percent), never to get called by friends (54.4 percent) and never to be invited to social activities (50.4 percent).

Empirical data such as the information from this study helps drive awareness and decision making. Based on these results, we now know with more certainty that many adolescents with ASD struggle to fit in with their peers. Backed with facts and figures, we can advocate for additional services and supports, target our research toward social skills interventions, develop better policies, and, ultimately, create more and better services and programs.

In this case, the research reaffirms the need for initiatives such as the Family Services Community Grant program that Autism Speaks created five years ago with two goals in mind: 1) to build the field of services for individuals with autism and 2) to expand the capacity to effectively serve this growing community. In addition, a Transition Tool Kit was created and launched last year to help guide the transition from adolescence to adulthood. Both cases demonstrate how Autism Speaks is providing solutions to help families address real challenges identified or documented through research.

The Community Grants [JSS1] are designed to meet needs in education, recreation and community activities, and specifically [JSS2] young adult and adult programs. Among the elements that go into a successful proposal are innovation and the ability to be replicated elsewhere.

To date, Autism Speaks has funded 193 community grants totaling almost $4.0 million across North America. A sampling of recent grant awards demonstrates how community initiatives across the country are addressing the need for social activities targeted to teens and young adults. Here are a few examples:

  • Several suburban school districts outside of Philadelphia banded together to organize “Acting Antics,” a program using live theater as a way to teach social cognition skills. Student actors perform in short scenes with a partner, each assuming the persona of a particular character. The exercise requires each student to consider the character’s perspective, creating an opportunity to teach this skill in a fun and non-threatening manner. The Autism Speaks grant will be used to expand the program to other school districts.
  • In Kansas City, a Girls Night Out program was established through the University of Kansas to build social competence and self-care skills for teen girls on the autism spectrum. The sessions take place in community settings such as a hair salon, coffee shop and gym. The community grant from Autism Speaks will be used to provide opportunities for girls with ASD to interact with typically developing peers during age-appropriate activities while improving social competence, friendship development, social skills and improved self-care skills.
  • Golf was the theme of “Far from Par,” a summer golf program for 16 middle and high school students in Bergenfield, N.J., that set out to improve communication, social and physical skills, and help the students forge closer bonds with peers, siblings and parents. The Family Services grant enabled the program to double attendance.
  • The Outdoors for All Foundation, in Seattle, was awarded a grant to expand its outdoor recreation program for children and adults living with ASD and their friends and families. The foundation was also able to design a week-long adventure camp for teens with high functioning autism as a result of their grant.

Our research funding will continue to help us target our family service grants toward specific areas of need and also allow for the development of new and more effective autism services.  We will continue to make use of those research findings to develop and expand new programs is equally important to improve the quality of life of teens and young adults on the spectrum. Autism Speaks would like to thank its supporters for helping us fund our science and family services grant programs.

*Although current consensus in the field eschews us of the term “mental retardation” in favor of “intellectual disability”, the study authors used the mental retardation term “to be consistent with the special education legislative definitions of the various disability categories and the way the survey data were collected.”


 

Healthcare, Technology and Autism converge at CES 2012

January 24, 2012 5 comments

This is a guest blog post from Marc Sirkin, Autism Speaks VP Social Marketing and Online Fundraising. He recently attended CES to support the launch of a strategic partnership with Careverge.com.

CES (Consumer Electronics Show) is big, really big. Crazy big. The annual show hosts some 140,000 attendees and features some of the most incredible technology, gadgets and ideas that shape how we interact with our world. The main purpose of my attending was to support a recent partnership between Autism Speaks and Audax Health’s Careverge [link]. Starting back in October, when we held the first “Hacking Autism” event technology has been on my mind, and as we saw on that incredible day, mobile apps and tablets are literally transforming the autism experience across the autism spectrum. It’s led me to start asking what I think is a great question: “How will new digital technologies and digital platforms transform the lives of those on the spectrum today and in the future?”

We continue to try to answer that question at IMFAR, our Core77 competition and have some exciting news to share in the days ahead about what’s next for “Hacking Autism.” I’m thrilled here to blog about a new partner, Careverge.

Careverge as you’ll see and hear in the video below is on the forefront of the “digital health” revolution. Spurred on by massive consumer pain and ever spiraling health care costs, entrepreneurs like Grant Verstandig, the Founder and CEO of Audax Health are bringing together a combination of technological ideas and experience, social networking, data analysis and gaming to create innovative and frankly, incredibly cool solutions.

I don’t know how Careverge will help you and your family but I suspect that you’ll come up with new ways to use the service.  There are already more than 200 members of the “Autism Speaks” community and now it’s your turn.  If you believe like I do that technology can and is making a different TODAY for all those on the autism spectrum, please register on the Autism Speaks Careverge site and and send us your feedback!

LIVE Chat with Geri Dawson, PhD & Lisa Goring Analyzing DSM-5

January 20, 2012 15 comments

Chief Science Officer Geri Dawson, PhD and Family Services Vice President Lisa Goring hosted a LIVE Chat to address concerns sparked by this week’s New York Times article on proposed revisions to the medical definition of autism spectrum disorder in the DSM-5, to be published in 2013. Readers heard about its potential implications for individuals to receive an autism diagnosis and appropriate services.

2:56
Hello everyone! This is Dr. Dawson. Thanks for joining us today to discuss the new DSM changes. We’ll be starting momentarily.
2:57
Hi All! Thanks so much for taking the time to be with us today. We look forward to the chat!
3:00
Comment From jennifer

Does the new DSM effect children already diagnosed…I have two with PDD-NOS….will their services change?

3:02
Hi Jennifer, This is Dr. Dawson. The new system has yet to be implemented. But once it is implemented, if your children were assessed again using the new system and, if they didn’t qualify for an ASD, theoretically yes, if could affect their eligibility for services. Autism Speaks will be monitoring this carefully. We want to make sure that no one is denied the services they need.
3:03
Comment From JenB

I read the new definition on the NY Times site. Is this the final definition or could it change? Would children who when first diagnosed met the criteria but who have been helped by intensive therapies and may not still meet them to the same degree (but still need therapy to continue to gain ground) be kicked out?

3:05
Hi Jen, This is Dr. Dawson. The APA committee that is developing the new criteria is in the process of finaling the criteria. They expect to be done in December. Then, they will conduct field trials to see how the criteria work in the real world. You ask a good question: What if a child no longer qualifies for a diagnosis because they received treatment? This will have to be decided byindividual school systems and other policy makers. We will be working hard to advocate to make sure that those children who are improving but still need services are able to retain them.
3:06
Comment From Robin

will children who are already classified be “grandfathered” per se or will we lose our classification and our services

3:07
Hi Robin, it’s Lisa – Services should be based upon the child’s needs. We will be monitoring it to make sure that individuals get the services they need.
3:09
Comment From Tavia

What does DSM stand for? Thank you.

3:09
Hi Tavia, This is Dr. Dawson. The DSM standards for the Diagnostic and Statistical Manual of Mental Disorders by the American Psychtriac Association. It is the manual that doctors use to diagnosis conditions such as autism.
3:10
Comment From Jeanie

What about children who currently have a diagnosis of PDD-NOS or Asperger’s? Will they have to be reassessed once the DSM-V rolls out, or can their current diagnoses stand?

3:11
Hi Jeanie, this is Lisa. Although it is possible that some service providers or funders could request a re-evaluation, especially if your child is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, most social service programs require an assessment to determine eligibility.
3:12
Comment From Rebecca Pavlik

I am very scared about this new diagnostic criteria. My son is PDD-NOS I have read as many as 85% of those children will be ruled out with the new criteria. My son has a 2 year developmental delay. He is ten reads at a 1st grade level, cannot write legibly, already receives basically no services outside of SSI and Medicaid. What will happen to all of these kids?

3:12
Hi Rebecca, This is Dr. Dawson. The study discussed in the New York Times article is very preliminary and probably overestimated the number of children who would be denied a diagnosis with the new system. So, hang in there. Given that your child has a two year developmental delay, he should qualify for services regardless. In any case, we are going to monitor this carefully to make sure that kids don’t get denied services under the new system.
3:15
Comment From melissa

what can we as parents do??

3:15
Hi Melissa it’s Lisa – As parents we need to stay updated and understand the guidelines and we need to continue to advocate for the services that our children need.
3:16
Comment From Bonnie

Will it be posted somewhere so we can read all the changes that are being made?

3:17
Hi Bonnie, that’s a great question. the American Psychiatric Association (APA) has a website that details all the information and background about the proposed changes to DSM-5. Here is a link: http://www.dsm5.org/Pages/Default.aspx. Thanks, Lisa
3:18
Comment From Guest

What is most disturbing to me is that the powers that be seem to see this as a way to solve the autism epidemic. Is there a governing board higher than the APA that keeps this in check?

3:19
Dear guest (at 3:12), This is Dr. Dawson. The proposed changes in the DSM will not “solve the autism epidemic.” In fact, research has shown that the broadening of the diagnostic criteria only account for a portion of the increase in autism prevalence. Approximately 50% of the increase remains unexplained. Autism Speaks is committed to understanding why there has been a dramatic increase, focusing on possible environmental risk factors that could be contributing. We are currently funding a study to get more accurate estimates of the prevalence of autism in the US and around the world and many studies focused on environmental risk factors. It’s up to all of us to work together make sure that the changes in the DSM don’t end up discriminating against people who need services.
3:21
Comment From Mara

How will this change affect our kids as they grow, will they still be protected under American’s with Disability Act?

3:21
Hi Mara, your question about protection under the American Disabilities Act (ADA) is a great one. Fortunately, autism will continue to be protected under the ADA. The proposed changes have nothing to do with changing the disability status of autism.
3:22
Comment From Guest

I have 2 male Grand sons non verbal autistic ages 8 and 5 already getting help. Do you think they will stay on the program?

3:22
Hi Guest it’s Lisa – the services that your grandsons are receiving should continue to be based upon their needs. It will be necessary to monitor their progress to make sure that their needs are being met.
3:24
Comment From Will

Why is Autism Speaks adopting a “wait-and-see” approach with regard to the outcome of this redefinition of what falls on the spectrum, and what steps are you prepared to take to insure that this change does not marginalize those currently considered to be high-fuctioning/Aspergers/PDD-NOS?

3:25
Hi Will. This is Dr. Dawson. We really don’t know yet how the new system will influence the ability to receive a diagnosis or services. The study discussed in the New York Times today is on a very small sample with old data and only included higher functioning persons. So, they are likely greatly overestimating the impact of the new system. We are designing and funding a study that will examine the impact of the new diagnostic system on diagnosis and access to services. We are also working with policy makers and insurance companies to make sure that people are not discriminated against when the new system is implemented.
3:28
Comment From Chone

I’m trying to ask a question in the chat but it isnt posting…. So here goes…. When can we expect our children to retested? And once retested will a new IEP need to done? Should we contact our schools and teachers now to find out? Personally I would really hate to wait until the middle of the next year

3:29
Hi Chone it’s Lisa – most likely you will still follow the current IEP, until your child’s annual review. Your child’s IEP should be developed based upon his or her strengths and challenges. As a parent you can always request an IEP meeting to review the goals and services.
3:29
Comment From Maria Lopez-Torres

in an article I read in the New york times it said that they are using a 1993 study for the changing the new criteria in the DSM, do you know if that is the only study they are going by or are they using any new study’s?

3:30
Dear Maria, the 1993 study referred to in the New York Times today came from a presentation that Dr. Fred Volkmar at Yale gave to the Icelandic Medical Association this week. However, that study has not gone through the peer-review process that research studies typically receive before publication. There is another study that was published in the June 2011 edition of the Journal of the American Academy of Child & Adolescent Psychiatry (JAACAP) by Mattila et al that reached a similar conclusion although the figures were very different. That same journal has a wonderful editorial by one of the members of the DSM-5 Neurodevelopmenatl Disorders Workgroup, Dr. Francesca Happe. Thank you for your question.
3:31
Comment From Vanessa in NC

What is behind the push to change the way ASDs are classified? I just don’t understand the rationale. Why lump everyone together? Our son’s needs, as someone with Asperger’s, are largely different than some of his peers at school who have a “classic” autism diagnosis and have more acute cognitive deficits.

3:33
Hi Vanessa, This is Dr. Dawson. The scientific rationale behind the changes actually are quite solid. The different distinctions among the subtypes (Autism, PDD-NOS, Asperger Syndrome, and so on) don’t map onto different causes or different treatment approaches. For example, a very similar treatment approach would likely be used for your son, who has Asperger syndrome, as would be used for a child with high functioning autism. The only distinction between Asperger syndrome and High Functioning Autism in the current system has to do with how much speech the child had by 3 years of age. It has been difficult for even expert clinicians to make reliable distinctions among the subtypes because these distinctions rely on people’s recollection of very early history. So, it does make sense to use a broad category – ASD. In addition, for each person, the doctor will need to describe the severity of symptoms, presence and degree of intellectual and language disability, and other factors, such as presence of medical conditions (e.g. GI distress) and genetic etiology (e.g. fragile X). While the new changes make sense scientifically, we need to keep in mind that this is not simply an academic exercise. We need to make sure that these changes don’t lead to people being denied the services they deserve.
3:34
Comment From Jason

Hello. My question is whether there are plans to look into the proposed changes to the diagnostic criteria with a more representative sample of children with ASD/Aspergers/PDD-NOS before the changes actually take place?

3:34
Hello Jason, your question about whether there will be any testing or validation of the proposed changes before they are implemented is a great one. The answer is yes, there will be a number of “field testing” studies conducted between now and the final publication date, which is expected to occur in May 2013. Thanks for participating in our chat today. Lisa
3:36
Comment From Guest

This change will effect only new diagnosis right? I mean you can’t take away a diagnosis? Can you?

3:36
Hello Guest (at 3:26). This is Dr. Dawson. The concern here is if a child (or adult) needs to be re-evaluated, they would be evaluated under the new system. We will be working hard to make sure that this won’t result in denial of services if the child no longer meets criteria for an ASD. This may need to be an advocacy effort state-by-state and we are commited to doing that, if necessary.
3:42
Comment From Tricia

It seems this is going to make it very difficult for families. My son has many of the service and he has come so far with them, but only with them. He has disabilities across the board, at least some in every area. Seems like kids like him who are improving are going to be left out in the cold if families are middle or low income.

3:42
Hi Tricia, This is Dr. Dawson. We don’t know yet what impact the new system will have. The study that was discussed in the New York Times article today likely overestimated the impact. If the new system does end up excluding some people from a diagnosis of ASD, it will likely be those with higher cognitive cabilities. If your child has disabiltiies across the board, he should qualify for services, even under the new system. That said, I agree that we don’t want to make obtaining services any more difficult for families. Families are struggling to get services as it is. Autism Speaks is commited to ensuring that the new diagnostic system doesn’t discriminate against people, especially those with low incomes or those with higher cognitive abilities.
3:43
Comment From Sue

I’d like to see some discussion about how these changes may impact adults with ASD. Please discuss how many adults with AS or HFA need significant supports to transition to independence and to maintain independence. Also,they may have high comorbidity of mood and anxiety disorders. These changes may take us backwards in our understanding of complexities of ASDs and quality of life in adulthood.

3:43
Sue, we share your concerns about how the changes may impact adults with ASD, especially those who fit into the more abled end of the spectrum. Your question about how many of these adults require supports for transition to independence is a good one. Unfortunately, this type of epidemiological research has not been conducted to date so we don’t have a good idea of what % of individuals meet this criteria. Quality of life during adulthood is a significant concern for us and one of the reasons we helped to develop Advancing Future for Adults with Autism, a consortium of organizations working to redefine the future for adults. Please link here for more info on AFAA. (www.afaa-us.org)
3:44
Comment From Peter Faustino

Hi Lisa and Geri – Thank you for doing this live chat. It’s clear that there is so much misinformation that it scares many people into worrying if programs and services will change. I wish the APA were doing more to educate the public about these changes. While I agree with everything you have said, do you think that pediatricians (often the first line of defense) will be hesitant to diagnosis autism and therefore slow early intervention? Right now the dx of PDD-NOS is used for young children showing signs of autism. With Early Intervention they are making tremendous progress. What can be done to share these unintended effects with APA?

3:44
Hi Peter it’s Lisa – this is a great question. We know how beneficial early intervention can be and we must continue to build awareness around the signs of autism so that children who qualify can get services as soon as possible. We must also continue to educate pediatricians as well as families about the signs of autism and the importance of early diagnosis. Thanks for joining us!
3:48
Hello Guest at 3:37, insurance coverage is an important issue to Autism Speaks and we don’t expect the DSM 5 changes to have a significant impact. All of the 29 state laws that require health plans to cover autism treatments have language in the definitions that apply to latest definition of autism spectrum disorders. So these laws will not be impacted by these changes. However, if a person does not meet the criteria for ASD under the new DSM, a doctor may choose or have to use another diagnostic code. Thanks for this question. Lisa G
3:48
oops. Here comes the question…
3:48
Comment From Guest

For some reason, these are not posting ot chat, so I will try one more time. Any ideas regarding the affect of these changes on insurance coverage for OT, PT, ST? I know that there have been great gains recently, with new laws put into use. I am a bit nervous that the new changes might affect our recent progress.

3:49
Hi everyone,
Your questions don’t automatically post because–fortunately–there are hundreds of you joining us.
3:49
We’re answering as fast as we can!
3:52
Comment From Michelle

How will this affect kids in the public schools seeking IEP services? I know in some cases, services are denied if they do not fit in the child’s specific diagnoses.

3:53
Michelle, your question about IEP services in public schools is a great one. Generally speaking, a diagnosis of autism is sufficient to permit a student to receive special educations services with an IEP under IDEA and we do not expect that to change under the new DSM-5 criteria. However, for those who no longer meet the new criteria it may become more challenging to qualify for an IEP. Of course, environmental accommodations are available through 504(b) if the student needs it. But make no mistake, we are very concerned that some students with autism may find it more difficult to get the support they need. Autism Speaks plans to closely monitor this situation and advocate where needed.
3:54
Comment From lisa

what is g.i. distress?

3:55
Hi LIsa, This is Dr. Dawson. Many persons with autism have associated medical conditions, such as sleep problems, gastrointestinal problems (GI distress), and seizures. Under the new system, the doctor will be asked to note whether or not the person has these conditions because they can greatly interfere with a person’s ability to take advantage of behavioral and educational treatments.
3:57
Comment From Dianna

One of my granddaughters is now a highly functioning autistic but that’s only because of my daughter and son-in-laws’ efforts and home-schooling. She will never be able to support herself or live alone despite all her advancements. I see a similar question was proposed earlier but if she is denied her medication she will definitely regress. It seems like it’s just another burden to put on our autistic population. She’s better, so she may not qualify when she’s reevaluated, so no meds, so she regresses, then reevaluated, back on meds, gets better, then fails revaluation, etc. Is this something you, Autism Speaks, will be trying to prevent? This cycle of passing evaluation / failing evaluation?

3:57
Hi Dianna, it sounds as if your daughter and son-in-law have done a great job advocating for your granddaughter. We will need to carefully monitor the effects of any possible changes in service. It will be important to keep data as to any changes in skills as a result of a change in service. We are working hard at Autism Speaks to provide tools and resources to improve the lives of all that are living with autism, including a grandparent’s support kit as well as a transition tool kit. Please visit the Autism Speaks website www.autismspeaks.org Thanks, Lisa
3:58
Comment From Jeff

Previous reports had mentioned that Asperger’s syndrome might be eliminated as a diagnosis entirely in the DSM V. Is this change part of what we’re discussing today?

3:59
Hi Jeff, This is Dr. Dawson. In the new diagnostic system, the subcategories of autism, PDD-NOS, Asperger syndrome, and so on, would be eliminated and all of these subtypes would fall under one umbrella term – Autism Spectrum Disorder. However, people may still want to refer to themselves as having Asperger syndrome, even though the diagnosis won’t be recognized formally by the medical community.
4:00
Comment From Beth

I would like to advocate in my state. How would I go about it? I am finishing my bachelors in Human Services and there is a great need for support here where I live

4:01
Dear Beth, we would love to have your help advocating in your state! Please visit www.autismvotes.org or contact our Government Relations department atadvocacy@autismspeaks.org. Thank you for your offer. We’ll let our AutismVotes people know! Lisa
4:03
Comment From JD

I am an adult with Asperger’s. Although I am high-functioning and have a masters degree, I am unable to maintain work. I have had over 30 jobs, so I live on SSDI. It is unlikely that I would be diagnosed with the Autism Spectrum Disorder in DSM-V. So would I lose my Social Security Disability Insurance?

4:04
Hi JD, This is Dr. Dawson. I am sorry to hear that it’s been so hard for you to maintain work. It is unclear whether the changes in the DSM would mean that you would no longer receive a diagnosis of ASD. However, it is clear that your disability is interfering with your ability to function and you could benefit from receiving support and services, such as job coaching. We want to make sure that people like you, who are struggling with symptoms of autism, still receive the support and services you need under the new system. We will work hard on your behalf. Please join us in our advocacy efforts.
4:06
Comment From Kathy

We’re a military family and I worry about how this might affect our son every time we move. Schools want to do their own testing and have documentation. How will this affect him and hopefuly protect him from being stripped of services?

4:07
Hi Kathy, as a military family please be sure to visit our support page for Military Families and Autism Advocacy athttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5141983/k.A9E4/Military_homepage.htm. As you obviously know, military families move frequently and need to change schools. That said, your son’s diagnosis shouldn’t change just because you move. In fact, that might violate federal education law so you should talk with a special education advocate or lawyer to make sure. Please visit our Family Services Resource Guide if you need a referral in your local area. Also, we have a Congressional Briefing on the military and autism on Jan 31st in Washington DC. Please visit www.autismvotes.org for more information.
4:08
Dear Everyone, I am so sorry we are unable to answer all of your questions. Please keep in touch through our Facebook page and follow the Autism Speaks Official Blog site. We will be monitoring and writing about the DSM as this unfolds. Thanks again for joining us. Dr. Dawson
4:09
Thanks so much for joining us!! Lisa

Learn More About January’s Home of the Month

January 19, 2012 1 comment

After we highlighted Farmsteads of New England as January’s “Home of the Month” on our new Housing Portal, we received many requests for more information about this housing initiative. For that reason, we asked its Founder and Executive Director, Deborah DeScenza, to blog about her experiences with her son, Andrew, and about how FNE got its start.

“What is going to happen to Andrew when he grows up?” I recall asking myself this question as I sat at my desk one night when my son was about 8 years old. Andrew had been diagnosed with autism years ago, and all of my focus and energy up to that point had been dedicated to working with his school to make sure he received the supports and services he needed there. But now I had a new concern: his long term future.

When I researched what services were available in our state, I found that there was basically only one model: adult foster care for residential services or competitive employment/volunteering/ “van therapy” during the day. I felt my son needed something different, so I started thinking about Andrew’s interests and needs, as well as his strengths and weaknesses. As Andrew grew older, it grew more and more difficult for me to take care of him alone. He was non-verbal, needed help with personal care, and he had developed insomnia and obsessive-compulsive tendencies that were very difficult to manage day in and day out. Andrew would need a staffed residence with 24-hour supervision and day services that would allow him to do activities that he could understand the meaning of. I also wanted him in a rural setting where he could safely expend his excess energy. It dawned on me that a farm might just be a wonderful place for him to live because it would provide him with the “room to roam” he needed without the worry of traffic on busy streets, and it would allow him to utilize his assets while minimizing the impact of his social limitations. But I also knew that we needed to ensure that he was not isolated and lonely.

Thus, I began to develop the idea of a farmstead that provides the opportunity for several people with autism (or other developmental disabilities) to live and work together in a supportive farming environment – an environment that gives these individuals the support they need to do meaningful work, to live a healthy lifestyle, and to develop genuine and long-lasting friendships. I also wanted a work environment that gives the staff the support they need in order to prevent the burn-out that is so prevalent in their field. I wanted them to have the chance to work as part of a team and to have help readily available if needed. So I developed a model in which the staff works in shifts as mentors to the individuals with autism – they live, work, and play alongside the farmers, modeling appropriate behaviors and interactions instead of simply supervising or coaching.

Today, after a lot of hard work, and some good fortune, our Farmsteads of New England consists of 6 residential buildings. Each one consists of four one-bedroom apartments surrounding a common room. In most cases, there are three individuals with autism or other developmental disabilities and one non-disabled mentor living in the building. We are able to provide essential supports to adults with a wide range of needs.  We have also focused on developing a good working relationship with the local community which benefits everyone involved.

Next, we hope to replicate our model throughoutNew Englandin the years to come. We have already started day services at a second farm inNew Hampshireand hope to add residential services there in the future. In my opinion, it makes sense to replicate a working model with the backing of an existing and successful organization, rather than force other families to start from scratch if they want a similar future for their child.

For more information about Farmsteads of New England, visit them here.

For more information about the new Autism Speaks Housing and Residential Supports Portal and tool kit, please click here.

The Best of Both Worlds

January 5, 2012 51 comments

This is a guest post by Allison Rogers.  Allison is a lawyer in private practice in Washington D.C. and volunteers actively with Autism Speaks in their housing policy initiative.  She has a younger brother, Adam, who has autism.

For as long as I remember I would ask my Mom these questions. Is Adam going to live at home forever? No. Will he live with me when I am older? He will have a house of his own one day. When’s that going to be? I don’t know, sometime after he graduates high school. Who’s he going to live with? Ideally Jeff and Joe, maybe a couple of other boys, and a support staff.

I will be completely honest and admit that I had no role in my brother’s summer of 2010 move into a group home. Throughout the years, my Mom promised us, without exception, that Adam would have a home of his own one day. I think this was her way of protecting all of her children and not just the one who needs the most protection. She took on the responsibility, not only because she was in the best position as a mother to advocate on his behalf, but because she did not want to leave this huge responsibility of mapping my brother’s future to her daughters. As the matriarch of the family she set the tone for familial relationships. Stacey and I, as sisters, must love and support Adam, but Shari, as the Mom, will make the big decisions.

Fast Forward to June 2010. I am locked in the basement of the law library studying for the bar exam, receiving texts from Mom. He’s moved out. Are you ok? I feel weird. Do you need to talk? Ok.

We talked. I did my best to assure her it was a transition, transitions are always hard, and once she gets used to the new living situation both she and Adam would be better off. I tried to comfort her. I remember saying, “it’s like when I went off to college; it’s like when Stacey went off to college. It’s a huge, but completely normal adjustment. And most importantly, he’s FIVE MILES AWAY.” And that’s how, just for a moment, the roles switched and I became the protective one, but not of Adam, of my Mom.

August 2010 I made my first visit to Adam’s home. The descriptions I heard that the house is huge; the house is beautiful; the house is individualized to your brother’s and his housemates’ needs were not inaccurate. The house is huge. The house is beautiful. The house is Adam. Adam lives with four other boys. Two of the boys, Jeff and Joe, Adam grew up with. They each have their own rooms, reflecting their personalities, and their bedroom doors are adorned with the first letter of their names. They have ample living and dining space, a back and front yard, a television and even a Wii.

I love Adam and his new independence. Of course, the house did not cure him. He’s still Adam. He still has his moods and he will still have his nights where he stays up all night shouting to whoever will listen. He still repeats words, sometimes hundreds of times, and he will still rip his shirts and blankets for no apparent reason. Yet he is happy. He is happy with his house. He is happy with his friends. He is happy to come home to my parents’ house and he is happy when we go to the house to visit him. I see pride when he shows me his room, points to the family pictures on his bedroom wall, shows me his Wii bowling skills and sets the dining room table.

I can honestly say Adam moving into a group home has given our family the best of both worlds. He has independence. My parents have their independence. Yet we are five miles and ten minutes away from family time.

Donating in honor of a friend

December 21, 2011 8 comments

Owen

This blog post is by Owen, with the help of his mom for the big words.

This past July, I started taking hockey lessons from a new coach at our hockey rink. One of the students he had skating with me was seven year old Cody Smith. Sometimes I did not understand why he would play good on some days and then have a bad day at practice (crying, leaving the ice, not listening to coach). His parents told my mom that Cody was a “special” person. He had something called Aspergers. (To a five year old it was just another big word.)  We became friends and started to do fun things together. To me he was not any different from me or any of my other friends, he had good moods and bad moods too just like we did. He played with the same kind of toys, went to normal school, and even played hockey like I did.

In October, we started planning my 6th birthday party. And even though I was excited that presents were going to be coming, I knew that there was something else better. I have all the toys I want, so I wanted to help Cody and kids that were like him. I told my mom and dad that I wanted to help raise money for Cody. I asked my friends who were invited to bring money to help Autism Speaks to the birthday party instead of presents.

A few weeks ago, I had my birthday party. Everyone had fun bouncing around, eating pizza, having cake and ice cream. Many of my first grade classmates and my hockey team attended. They brought presents for me (even though they did not have to) and also money to donate to Autism Speaks. When mom and dad finished counting all of the money, I had raised seven hundred dollars. My parents tell me they are proud of me for helping out someone else. Cody’s mom and dad told me that I was special for helping out a good cause. I just know that I was helping my friend.

Cody

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