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Posts Tagged ‘military’

Military Families: Let Congress Hear Your Voice!

January 25, 2012 1 comment

On January 31, military families will get their chance to tell Congress about the special challenges they face raising children with autism. Many military parents will be in the audience.

But many more will be unable to make it to Washington for the briefing.

Autism Speaks believes their voices need to be heard as well. We are making it possible for these military families to record a brief story about their experiences and upload it to our YouTube page. We will share as many of these videos as possible with Congress, including airing portions of them during the meeting.

Visit our YouTube page to find out how you can participate!

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

Autism Speaks Recognizes Pearl Harbor Day and our Military Families

December 7, 2011 4 comments


President Franklin D. Roosevelt’s powerful and iconic speech following the Pearl Harbor Attacks.

As we honor our military on this special day in our nation’s history, the Caring for Military Kids with Autism Act (HR.2288) continues to languish in Congress. Did you know that our service members lose all autism benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat?

The Caring for Military Kids with Autism Act would end that injustice against those who do so much for our country. HR.2288 would make clear that all military members, whether on active duty or retired, qualify for autism insurance benefits for their dependents. Take time today to help our military families.

Write your Member of Congress below and ask them to co-sponsor HR.2288! If they have already signed on, send them your thanks!

Here is How YOU Can Help:

1) PLEASE ASK YOUR MEMBER OF CONGRESS TO CO-SPONSOR THE CARING FOR MILITARY KIDS WITH AUTISM ACT BY SENDING THEM AN EMAIL HERE. NOTE: We have it preloaded in the system so if your Member of Congress has already sponsored this legislation they will receive a thank you note; if not, they will receive a request to sign on as a co-sponsor. You can take action here.2) SPREAD THE WORD ON FACEBOOK. Post the following suggested message on your Facebook page:“SUPPORT OUR MILITARY FAMILIES! Email your Member of Congress to ask them to co-sponsor the Caring for Military Kids with Autism Act. Military members now lose their autism insurance benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat. Help end this injustice against those who matter most to our country by taking action with your Member of Congress on the link below. Repost. Then write DONE so I can thank you!”LINK TO: www.autismvotes.org/Military Kids

To learn more about the Caring for Military Kids with Autism Act, please visit our Military Families page.

Please stay alert as we guide the autism community in ways that can help make this a reality for our military families. Let’s serve those who serve us! They have put their lives on the line to preserve our freedom, right to vote and opportunity to approach our political leaders every single day. Their children deserve appropriate coverage.

See how many people YOU can activate to help!


5 Things Every Parent in the Autism Community Can Learn from a Military Mom

September 21, 2011 16 comments

Parenting a child on the autism spectrum is challenging enough.  Now imagine your spouse’s job involves moving the whole family to a new state every three years – and your spouse gets deployed to war zones for year-long stints, leaving you to hold down the fort at home.   Such is the case of many military spouses, including Kristin Proffitt of Colorado Springs, CO, and Kristina Matthiesen of Columbus, Georgia.  Relocations, single-parenting, lining up new providers, and building new support networks are topics these women know intimately.  Kristina and Kristin were kind enough to sit down with me and share 5 key lessons learned in the past few years that are applicable to most parents of a children on the spectrum.   At the end, they also share specific tips for parents in the military.

5 Tips for All Parents

5. Seek Alternatives to Long Wait Lists for Diagnosis – Kristin Proffitt’s son, J.J., was 16 months old when her husband Josh was relocated from a base in Georgia to Ft. Carson in Colorado Springs.  “J.J. didn’t take the move well and at 17 months of age, he lost all his words,” explains Kristin.   “The wait list to see a developmental pediatrician at Denver Children’s was insane.   All told it was going to be about 12 months before we could get a diagnosis.   So I looked around and found a private clinic called Legacy Comprehensive Counseling that could get us in within two weeks.  I had to do a little negotiation with Tricare (the military’s health plan) to get it covered, but we did it: got the diagnosis, and got J.J. into early intervention services much sooner.”

4. Start Evidence-based Early Intervention Programs -  A report of the U.S. Surgeon General states that thirty years of research on the ABA approach have shown very positive outcomes when ABA is used as an early intervention tool for autism.  Like many military parents on MyAutismTeam.com, both Kristin and Kristina have ABA providers on their teams to supplement the services their kids receive through their IEPs. While there are still many insurance plans that do not cover ABA therapy, fortunately for these military moms, Tricare does.

  • ABA Therapy  – Kristina: “When we finally switched to a certified ABA therapist in Columbus, the change could be seen within the first week. A true ABA therapist will pinpoint exactly what your child needs to work on and update their goals often (ours is weekly).”

Kristin:  “We met our ABA therapist through parent training and got her to start coming to the house twice a week to work with J.J.  We have a great rapport with Kelley.  She’s the only therapist J.J. refers to by name.”

  • Speech Therapy once a week – “J.J.’s made incredible gains.  He’s 3 years old.  In November he was just starting to say ‘ball’, but now he has a vocabulary of over 125 words and he’s starting to string together two to three words at a time.”

Speech was also the biggest developmental area for Kristina’s son and the area in which he’s made the most progress.

  • Occupational Therapy once a week  Kristina reports, “We’ve been going to the OT for about six months and have seen a great deal of improvement in my son’s handwriting.”   

Kristin’s OT focuses on another area entirely.  “J.J.’s a ‘sensory seeker’ and a runner with no sense of danger,” explained Kristin.  “He crashes into things and people.    We have had to put additional deadbolts out of his reach on all our doors to make sure he doesn’t run out and endanger himself.  Our OT is helping him with sensory integration.”

3. Don’t Settle With Providers You’re Not Comfortable With and Trust the Ones You Like – Kristin considers herself blessed to live in Colorado Springs where the special needs services and providers are relatively bountiful.  “If you’re not comfortable with you pediatrician or specialist, don’t let Tricare (or anyone else) pigeon-hole you into using someone you don’t want.”

She also points out the importance of being open to the suggestions of providers you have grown to trust.  “When J.J. went to school I was convinced it would be best if I were to drive him instead of letting him take the bus.  Our ABA therapist encouraged me otherwise, saying the school bus ride would build valuable routine into his day and make it easier for me to drop in at school to observe without him assuming it was time to go home.  She was right, and it turns out that riding the school bus is the highlight of J.J.’s day!”

2. Incorporate Fun Extra-Curricular Activities into Your Team – Many parents on MyAutismTeam have extra-curricular activities on their teams – from piano lessons to gymnastics to martial arts.   Kristina has a Taekwondo gym on her team.  “They work on things like listening, following directions, and of course taekwondo skills in a fun environment that the kids enjoy.”

1. Reach Out / Don’t Do It Alone – Having moved cities multiple times and faced extended, stressful periods of single-parenting while their husbands are deployed, both women understand the importance of reaching out for help.  “You need to find the emotional support in your community – online or locally.”

  • Reach Out Locally: “When you’re moving so much it’s hard to keep putting yourself out there,” explains Kristina who had to move from Texas to Georgia just ten days after receiving her son’s diagnosis of PDD-NOS.  “When you have a child that isn’t acting in a socially normal way – it can be even harder to put yourself out there, but you need to reach out.  I’m more comfortable around someone who has a child on the spectrum because nothing fazes them anymore!  Searching for parents near you on MyAutismTeam is a great way to find other people in your area (military or not) and a place to find new providers.  I also turned to the local mother’s club website.”
  • Reach Out Online: Despite being separated by 1400 miles, Kristin and Kristina connected on MyAutismTeam when they saw they were both Army Wives.  “I definitely try to connect with other military spouses,” explains Kristin.  “I can identify with them more no matter where they are stationed or what branch they are in.  I can feel more comfortable with them saying, “My husband is deployed” because they instantly knows what that entails. “ 

(Note: More broadly – we see this trend happening on the MyAutismTeam live feed where geographically separated parents connect to discuss common challenges such as family members blaming autism on “bad parenting”, feeling isolated (another military mom), acting up in school, sleeping problems, feeling  overwhelmed by new autism diagnosis, and transition to adulthood.)

Additional Tips for Parents in the Military

Heather Hebdon, Founder of Specialized Training of Military Parents (www.stompproject.org) reports that 1 in 50 children of military parents are diagnosed on the autism spectrum.   That rate is higher than the 1 in 110 ratio typically quoted for the United States.    The military has been relatively forward thinking when it comes to helping families dealing with special needs.   Here are some extra tips Kristin and Kristina shared for parents in the military.

  1. Sign up for EFMP (Exceptional Family Member Program).  The different branches of the military have their own programs.  More information about EFMP can be found on the Military Homefront site.
  2. Enroll in ECHO – Echo is the Extended Care Health Option, a program through Tricare open to people who need assistance above and beyond EFMP.    Having ECHO allows you to get coverage for ABA therapy and more.   Kristin reports, “Our EFMP case manager at our on post hospital told us about ECHO.  J.J. was automatically approved for it since he already had been diagnosed on the spectrum.”
  3. Become friendly with your EFMP coordinator and the Pediatrician  – Kristin: “Get on a very good basis with your pediatrician, particularly if they are on a MTF (Military Treatment Facility) on post, as well as your EFMP coordinator.  Dr. Choate, our pediatrician, knows us and knows what J.J. needs.  That personal relationship makes your providers want to fight for you.  Our EFMP coordinator, Laurie, has been an invaluable resource and member of our team.   She knows Dr. Choate and she will talk to him about getting us a referral (like for a speech therapist and OT) when we need it.
  4. Talk to Tricare when you need another referral or another options.  “You don’t have to settle for the first referral you’re handed .”
  5. Encourage providers you like to register with Tricare so you can continue to work with them and get it covered.

Kristin:  “We met our ABA therapist, and OT through the early intervention program in Colorado Springs.    When J.J. was about to age out of early intervention, we got both of them to register with Tricare so that we could continue to work with them as J.J. got older. “

  1. Research New Providers Ahead of Your PCS & Share Your Team for Other Military Parents -  Kristina: “I know MyAutismTeam will be really helpful when we are PCS’ing.  I will be able to look ahead and see what services are in the area and what people there can tell me about those providers.  There’s nowhere else I’m going to get that information, military or not.  It makes me want to share my team to help out other military parents who might move to my base.”

You can reach out to Kristin and Kristina on MyAutismTeam.

- Interview Conducted by Eric Peacock, GM of MyAutismTeam.  @MyAutismTeam  @ejpeacock

In Their Own Words – Meeting My Baby Girl

July 21, 2011 17 comments

This is a blog post by Rachel, a military wife and mother of two children. Her daughter RM was born with a 4q Deletion and has an autism diagnosis. Rachel was part of the ‘Light the White House Blue for Autism‘ campaign and has a blog,’Welcome to StimCity.’ 

Finally.

It was the longest wait of my life in that Recovery Room, but I was finally brought to a private maternity room on the floor.  Within minutes, a nurse was wheeling in my beautiful baby girl.  As she passed RM to me –I can still feel the sensation – my heart swelled with a new kind of love, one that would carry me through a journey I had never guessed was coming.

It would prove to be a day filled with mixed emotions, most of which I was unable to recognize at the time.

I can recall purposefully not looking at the pinkie finger.  Instead I studied every other inch of her.  I can also admit that her overlapping toes were undeniable.  However, it was far easier at the time to believe that any kid who had spent the last several months literally sitting on her toes would be a bit scrunched up in that area.

But then there was the matter of her very tiny, nearly non-existent chin and very tiny mouth.  She couldn’t latch on to my breast to feed and after failing to breastfeed my son, I really wanted to find success this time around.

It was a no-go.  She just couldn’t do it.

The nurse came back with a bottle and after several attempts at that – long periods of sucking that barely drew a drop from the nipple – panic was beginning to set in.  She would cry of hunger, but the cry was a sound I had never heard before.  Muffled.  Like there were cotton balls in her throat.

Where the hell was my husband?  Why was I sitting here all alone with this baby and getting nowhere, having no answers and feeling that I was sinking into a dark abyss.  Call it denial, postpartum exhaustion – whatever – but I was not bonding with this child.  Instead I was terrified.

I don’t remember much of that first afternoon into evening.  It would be 24 more hours or so before my SGM made it to the hospital.  In the meantime I was alone.  I had sent RM to the nursery so that I could rest.  But in reality, I think I had done so because I was unable at the time to process that my baby’s entrance into this world was a far cry from joyous.

I only needed to make it through that night.  Then I would see my soldier again.  And he would make everything alright.

The next day, when my SGM walked into my room, my world was whole again.  He would prove to be the strongest, most faithful soul I had ever known – from that first moment he held her, he knew in his heart RM is perfect just the way she is.

A soldier who commits his life to serving our country innately possesses certain qualities that few of us civilians can fully understand.  SGM has never faltered in his belief that even when the mission is critically compromised, remaining steadfast and courageous can still get the job done.  Failing to follow through is not an option.  He has applied those same principles to RM, and in doing so has taught me to keep fighting.

If you haven’t done so, please support the Caring for Military Kids with Autism Act – HERE

We cannot change the world without first being the change we seek.

Thank you.

Love,

Rachel

For more on Military Families and Autism Advocacy please visit Autism Votes

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

 

 

Honoring our Military Families

March 30, 2011 3 comments

Master Sergeant Buck Doyle (USMC, ret.) fought in five combat tours as a Reconnaissance Marine and was severely wounded during his third deployment to Iraq.  He is a recipient of the Purple Heart and was awarded the Bronze Star with “V” for his actions on the battlefield.  Below is an article written by his wife, Kyla Doyle highlighting their efforts to improve services and supports for military families impacted by autism (originally published in the Coast News on March 25, 2011).

Last summer, after my husband retired from the Marine Corps, we moved our family from my childhood home in Solana Beach to a beautiful little valley in northern Utah, where we are enjoying the seasons and the slower pace.

But now we’re coming back.

On Saturday, April 2nd, Buck and I will get on a plane, and come back to San Diego for a day to run in ACT Today for Military Families’ 5K/10K race to benefit military families with children affected by autism.

I’ve never run a 10K before, but this one’s had me literally training in the snow since January—because the cause is so important to us.

You see, our seven year old daughter, Kate, is among the 1 in 88 military children with autism.  But thanks to early, intensive intervention, Kate has gone from a diagnosis of severe autism at the age of two, to being virtually indistinguishable from the other children in her new first grade classroom.

To get there, we have had to wage a five-year battle of our own—with our insurance company, the school district, the state; the people we had thought would be our allies—in order to get Kate the services she needed.

If you ask my husband which was harder: getting shot by a sniper in Iraq or trying to recover our daughter from autism, he’ll tell you it was the latter, not the former.

Through thousands of hours of individual therapy, and an enormous financial and emotional toll on our family, Kate has made progress that we didn’t dare dream for her five years ago.  All the while, Buck was fighting the nation’s battles—wanting only that his family—his little girl—be taken care of in his absence.

ACT Today for Military Families, is doing exactly that—filling a gap that currently has many of our military families in crisis.  ATMF is helping to meet the immediate needs of families and children affected by this devastating disorder, who are simultaneously under the stress and strain of sending their loved one into harms way.

I am often asked by friends and neighbors how they can show their support for our military—and my answer has always been to take care of their family here at home.

Participating in ACT Today’s 5K/10K run and ONE HOPE Family Festival is a perfect opportunity to provide immediate help to military families and who are challenged even more than most—Buck and I invite the San Diego community to join us on April 2nd – in hopes that Kate’s success can be had by other children, and the road to that success can be made smoother by our efforts.

Semper Fidelis.

For more information on how you can help or to register to run in the ACT Today for Military Families 5k/10k, go to www.acttodayformilitaryfamilies.org

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Breaking Through the Glass Ceiling

July 6, 2010 4 comments

Marine Corps families meet with Mrs Michelle Obama on June 13, 2010 at Camp Pendleton, Calif. GSgt Lynnette Glover, Rani O’Donohue, First Lady Michelle Obama, Karen Driscoll Cindy Farnum, Liz Tashma, Bernadette Jarosz

This guest post is by Karen Driscoll, who is a Marine wife, mother of three (one with autism) and ACT Today! For Military Families Campaign Director.

The expression “Warrior Mom” is often used throughout the autism community. It is a badge of honor describing the battles mothers have engaged in to help their children experience the opportunities in life every child deserves. As Warrior Moms, we put our dukes up to fight for care and treatment; we work diligently to educate and build awareness within our communities, and we mentor and support others along the journey. We are fierce. We are wise. We are compassionate. We are Mothers.

“Warrior Mom” takes on a whole new meaning when put in the context of the military family impacted by autism. The military family wages a battle on two fronts: one for our country and another for our children. As a Marine wife and a mother of a young child with autism, this is very personal. I understand all too well the challenges autism brings to the military family and I have become a vocal advocate for our children with special needs.

I work alongside several other military spouses (across all branches of service) who have children with autism, to raise awareness of the challenges that military families with special needs face. Our mission is to enhance the quality of life for military families with disabilities and special healthcare needs by advocating for the medical necessity of evidence-based treatments and other much-needed family supports and assistance. Working toward comprehensive policy and legislative reform is never an easy task, especially when putting things in context of the Department of Defense or the Senate/House Armed Services Committee.

The statistics are staggering. One in 88 military children has a diagnosis on the autism spectrum, and less than 10 percent of these special children are receiving recommended care and treatments. This is why First Lady Michelle Obama met with Marine Corps families at Camp Pendleton recently to discuss policy reform and to work toward improving services and supports for military children. I was fortunate to be part of this important meeting with the First Lady and witness what another Marine wife described as “the opportunity for parents of children with autism to break through the glass ceiling” and reach key individuals who are in a position to resolve many of the issues our families face.

Mrs. Obama listened as parents highlighted the challenges military families with special needs experience to access appropriate care and treatment services through TRICARE, the health insurance system for members of the U.S. military. Families impacted by autism discussed the tremendous emotional and financial strains caused by the limited services under existing TRICARE programs and emphasized the importance of improving TRICARE coverage of autism care.

“My goal is to help the rest of our country better understand and appreciate the incredible service of you and your families, and to make sure your voices are heard back in Washington and that your needs are met,” said Mrs. Obama. “I am launching a national challenge to Americans to find ways to rally support of the military family. One percent of America may be fighting our wars, but 100% of America needs to be supporting parents in that fight.”

I am humbled by the First Lady’s commitment to the military child. Military families shoulder significant responsibilities today and make tremendous sacrifices few can fully appreciate. Military families impacted by autism have additional stresses as they cope with extraordinary circumstances and limited treatments our precious children urgently need and deserve. Autism is treatable, and with treatment our children can make significant gains, but funding for these vital services is limited and often elusive for the military family. I echo the First Lady’s challenge to America to please support military families who have sacrificed so much and I ask for your particular attention to the unique needs of military children with autism.

In the words of First Lady Michelle Obama, “We’re working to be an America where more people not only understand the service and sacrifice that [military] families make, but where more Americans take action to help lighten your load.” Military families deserve the quality of care  equal to their heroic service and sacrifice in defense of our nation, our people, and our freedom.

Semper Fidelis.

To learn more about legislation and policy initiatives for the military family affected by autism, please visit www.autismvotes.org/military.

ACT Today! (Autism Care and Treatment Today!) is a non-profit organization dedicated to providing funding to families that cannot afford or access the treatments their children with autism need.   It was founded by Dr. Doreen Granpeesheh, a renowned expert in the field of autism and Applied Behavior Analysis.  Through direct donation, corporate sponsorship, and community generosity, ACT Today! is changing the lives of children TODAY.  Recognizing the extraordinary challenges military families impacted by autism experience, ACT Today! has launched ACT Today! for Military Families a fundraising campaign benefiting military children with autism to help defray out of pocket medical costs.  For more information on how to help a military family impacted by autism, go to: www.acttodayformilitaryfamilies.org.

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