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Autism Parents Share: 8 Tips For Keeping It Romantic In A Marriage

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Having a child with autism can be tough on a marriage. Besides the emotional and financial strains that come from providing for a child with autism, there’s a huge time commitment involved with therapies and medical appointments. All that responsibility and pressure can make it difficult to have time or energy left for romance. So what are moms and dads to do? We asked parents on MyAutismTeam how they “keep the romance alive” in their marriages. These are their tips, most of which apply to any busy parent!

1. Plan date nights.

Take the time to line up a sitter or respite care at the beginning of each month to make sure you get out. No planning ahead usually means no date! As one mother on MyAutsimTeam shared, “My husband makes it a point for us to have date night at least two times per month. Sometimes we only go out for pie and coffee.  It’s not much, but it makes me feel like a million bucks.”

If you’re having trouble lining up a sitter, several parents on MyAutismTeam have had success using sites like SitterCity.com to find sitters who are familiar with autism.  With 1 in 54 boys being diagnosed with autism in the U.S., it’s no surprise that there are a lot of sitters experienced in caring for people with the condition.

2. Try the weekday lunch date.

If getting a sitter is difficult or too expensive, try meeting up for lunch while your child is at school—or have a late breakfast date before heading into work. As New Mexico mom Sharon Esch explains, “My husband and I have a weekly lunch date while my son is at school.  It’s great because we don’t need to get a sitter, we have time to talk to each other about adult things, and we are not falling asleep!”

3. Set a dedicated bedtime for your child.

This is the secret weapon that far too little parents use: Create a fixed bedtime for your child that leaves an hour or two in the evening for you to spend with your spouse.  “Our son has a designated bedtime at which he goes to sleep every single night. Non-negotiable,” says Debbie Caruso of Massachusetts. “We have a night-time routine that starts around 7:30 with bath, books, a favorite calming video and sleep time. ” Word to at-home moms: rest up! Says Caruso, “I nap while my son naps, so I can still have energy left when my hubby comes home.

4. Flirt! (Remember that?) 

Re-introduce flirting with your spouse, recommends Terri Eagen-Torkko from Michigan.  ”Write love letters while you’re in the waiting room during therapies.  Send flirty text messages.  Every day, tell [your spouse] that you love them and why.”  To take advantage of those times for intimacy, she continues, “teach the kids that a closed door means knocking AND hearing an answer before entering!”

5. Have moratoriums on autism talk.

Parenting a child with autism can be all-consuming; it can easily take up every minute of daily conversation with your spouse if you let it. Kansas father Martin Cunningham says it’s critical to occasionally set autism aside so you can have time to “remember the reason you married your spouse in the first place.” He recommends that couples take a few hours every week for “conversations with each other, and with friends, that have nothing to do with autism.” Adds Chris Tryon, a father of two in New York, “Keep up with your friends! You need to keep sight of who you are apart from your child.“

6. Create structure for your child on weekends.

Shifting from the structured school day and therapy schedule to an unstructured weekend can result in exhausting parenting work that leads to no relaxing time with your spouse. Many parents schedule activities such as taekwondo, gymnastics, or swim lessons to start the weekend off with structure–and hopefully gives them some time for each other later in the day.  In her blog post How this autism mom stays married, noted autism writer and MyAutismTeam mom Laura Shumaker shares that her husband got up every Saturday morning, made pancakes with her boys, and then watched Disney movies with them.  He did it to let her to catch up on sleep, but regular weekly traditions like that can create its own predictable structure for a child on the spectrum.

7. Give your spouse time to him or herself.

Sometimes the best thing you can do for your romance is to ensure each spouse gets time to him or herself.  A 2009 study showed that Autism Moms have the same levels of chronic stress as combat soldiers. Whoever the primary caregiver is in the household, make sure that person gets some time to recharge! Laura Shumaker shares that she and her husband cover for each other on parenting duties each week.  “My husband has played tennis every weekend [possible] for the past 28 years, and I get out to exercise, shop, see friends, or have one on one time with my other boys.”

8. Remember, you’re in this together.

“One sure way to destroy romance in a marriage is to extend the fighting we must constantly do (on behalf of our children) to the spouse”, says Martin Cunningham, a father and husband in Kansas. “It’s too easy to view our spouse’s perspective as adversarial when it does not match our own.  It takes a special intent and energy to remember that they want to help and, more often than not, a tremendous effort to maintain open communication about those differences.”

Laura Shumaker suggests couples taking extra pains to keep things civil.   “When I’m stuck at home all day and am STIR CRAZY, I resist the urge to say “Your turn!’ and race out the door the second my husband gets home.”  She explains that they hug and kiss, and have a moment to acknowledge each other before she says, “I’m going nuts.  I think I’ll go to the bookstore for a little bit. Is that OK?”

To connect directly with the parents mentioned in this article (and thousands more) and share your own romance tips, visit MyAutismTeam.

 This post originally appeared on Parents.com.

MyAutismTeam Parents Speak Out

At MyAutismTeam, we are very saddened by the tragedy at Sandy Hook Elementary school last week. Our hearts and prayers go out to the victims and families impacted by this catastrophic event.

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In light of the varying news stemming from this horrible event, autism experts are rushing to silence the notion that there is a link between autism spectrum disorders and this kind of violence. Knowing that there are hundreds of conversations swirling on MyAutismTeam about fears of how children on the spectrum may be unfairly targeted (even more so) we asked our community at MyAutismTeam for help in responding to our survey so that we can give a unified voice to parents of children with autism.

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The survey went out to more than 34,000 parents on MyAutistmTeam and received record-breaking response times. It’s evident that these questions were those that many of our parents were already thinking and asking themselves and wanted to share their opinions. As our goal was to shed light on the misconceptions currently surrounding autism, our questions focused on the concerns that such an event can have on children on the autism spectrum.

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When asked “To what degree are you concerned about your how your child will be treated at school,” approximately 30 percent of parents reported, “I’m worried my child will be treated differently by teachers and other students” and two-thirds of those parents are specifically concerned that their child will be subject to increased bullying at school because he/she has autism.

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Parents were also asked, “As a parent of a child on the autism spectrum, what are the most important things you want other parents to know about autism, and to share with their children?” Below are the results listed by frequency of answer.

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  • Autism is not a mental illness, it’s a neurodevelopmental disorder (79% of responses)
  • Kids with autism are more likely to be victims of violence themselves than to perpetuate it against others (78%)
  • Autism is not linked to violence, and it did not cause this tragedy (73%)
  • Be vigilant in making sure kids with autism are not bullied due to misplaced blame for the tragedy (71%)
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To learn more about how you can support your children during this time, visit MyAutismTeam.com and learn from a community of parents just like you. Also visit AutismSpeaks for tips on how to help your children deal with a tragedy.

7 Tips from Autism Parents on How They “Keep the Romance Alive” with their Spouses

Having a child with autism can put stress on a marriage. Ask veteran autism parents, “What do you wish you knew then that you know now?” and many say that they wish they’d spent more time maintaining their relationships with their significant others before the relationships fell apart.

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Here are 7 quick tips shared by parents on MyAutismTeam for “keeping the romance alive”.  These are all from parents who have children on the autism spectrum.


  1. Date nights are critical so Plan Ahead

    Take the time to line up respite care or a sitter at the beginning of each month to make sure you get out.  No planning ahead usually means no date. (See below for more on finding autism-friendly respite care and sitters)

    My husband makes it a point for us to have date night at least 2x a month to just be us. Sometimes we only go out for pie and coffee, its not much but it makes me feel like a million bucks.

  2. The Weekday Lunch Date

    My husband and I have a weekly lunch date while my son is at school.  It’s great because we don’t need to get a sitter, we have time to talk to each other about adult things, and we are not falling asleep! :)

  3. Dedicated Bedtime for Your Child

    Set a fixed bedtime for your child that leaves an hour or two of evening time you can spend together, before you pass out from exhaustion yourself. If your child can’t fall asleep at 8pm, try to build the routine that they still go to their room at that time.

  4. Getting Creative

    Flirting (even by text), and napping when my son naps so that I’m awake when my husband gets home

  5. Non-Autism Talk

    Every week we make sure we have conversations together, and with other adults, that has nothing to do with ASD or our work.

  6. Beware the completely unstructured weekends

    Weekends can be tough. My husband and I typically want to unwind and have no routine, but the lack of routine throws our son for a loop. That leads to way more emotional outbursts and power struggles, making it hard to even think about time together.

  7. Divide & Conquer

    Sometimes the best thing you can do for your marriage is divide and conquer so that Mom gets to time to herself to reclaim her sanity.  A 2009 study showed that Autism Moms have the same levels of chronic stress as do combat soldiers! It’s tough for someone under that much pressure to have anything left to give to a marriage. In some households the Dad is the primary caregiver.  Make sure that person gets some time to recharge!

On Finding Autism-Friendly Sitters and Respite Care

    • Respite care is hard to come by but you may be able to get some hours covered through programs by your state or through your local Easter Seals chapter.
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      Visit the Easter Seals website or search for “Easter Seals” in your city using the MyAutismTeam Provider Directory.

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    • Check out Sittercity.com- MyAutismTeam has negotiated a free trial and a 50% discount for all MyAutismTeam parents on SitterCity.
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      SitterCity.com is a website that makes finding qualified sitters online really easy.  They don’t provide sitters trained in autism, but often you can find sitters who have had experience working with children on the spectrum.  It may just be enough to give you a few hours to yourself.  For more details check out our post on Finding an Autism-Friendly Sitter (and use the link there to get the MyAutismTeam discount).

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  • Use MyAutismTeam to form local autism-friendly babysitting coops.  Join MyAutismTeam and find other parents near you who have children similar to yours and who understand autism.
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    You may be able to arrange something where they can watch your child once a month and you can do the same for them.  The more people are in the group, the more options for sitters.

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Please share your tips on how you keep the romance alive with your significant others!

Finding an Autism-Friendly Sitter

Recently, several parents on MyAutismTeam were comparing notes on how to find autism-friendly babysitters and one mom mentioned the website Sittercity.com as a potential source. I was intrigued.  We’re always looking for good resources for MyAutismTeam parents but wondered if Sittercity, a website aimed at finding babysitters for the mass market, could be of any use to parents of kids with autism?

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I decided to conduct a little test – be a secret shopper so to speak – and the results (explained below) really surprised me.  It may be a great resource for many of you.  We’ve negotiated a free trial and 50% discount for all MyAutismTeam parents so you can try it out yourself.

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The Test

(You Should Try This if You’re Looking for a Sitter)

    • I did the free trial to post my babysitting job and see if I got any responses.
      (My son doesn’t actually have autism, but I wanted to see if it would work for parents on MyAutismTeam).

      “I’m looking for a caring, female babysitter to take care of my 7 year old boy with autism for a few hours on Saturday nights so that I can go on a date with my wife.”

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The Results
  • Within three days I got 7 enthusiastic responses from local sitters who were interested in taking the job.  Four of the seven women actually had direct experience working with kids on the autism spectrum in the past!  The other three were open to learning and/or had experience working with special needs kids.  I guess with 1 in 88 children being diagnosed, there’s a decent chance you’ll find a sitter who has had some experience with autism.
  • I paid for the one month Sittercity membership (that’ll be $17.50 for you) so that I could get the contact information for all 7 women, call them, interview them, record their numbers for future use, and even hire them.
  • Out of that I had 3 names of sitters I could call at any time going forward! That worked out to about $6 to find a qualified, autism-friendly sitter.  Well worth it.
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Note: I ended up doing this again for my own kids (who are not on the spectrum) and found Jenna, a sitter we’ve worked with several times since then. The beauty of this deal is once you’ve found a sitter you like, you never have to pay SitterCity again! I just booked Jenna to sit for us the night of the MyAutismTeam holiday party!

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Not Trained Autism Professionals

Obviously, a sitter you find through this service is not a trained autism professional.  We’re not suggesting that Sittercity will be able to fill that void for you.  But depending on the needs of your child, you may just be able to find someone who can at least give you a chance to:

  • Go on a date with your spouse
  • Attend that office holiday party
  • Go out on New Years
  • Get some time for yourself

If you want to know more about the sitters before hiring them you can actually run a background check on them through Sittercity.

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Test it Out for Free & Please Give Us Feedback

Use this link and you’ll automatically get a MyAutismTeam discount of 50% off should you choose to join Sittercity.  I suggest doing the same test I did.

  • Start with the free trial, post your job, and see if you get any responses you like
  • Pay the $17.50 if you get a good response so that you can interview the sitters.  Make sure you get their phone numbers and email addresses for future use!  You’ll be able to call these sitters up any time you’re in a pinch.
  • Try out a sitter and get some important time for yourself
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Let us know how it goes!  I live in Silicon Valley where adoption of Sittercity is likely higher than in other states, so you may not find the same coverage of sitters that I did.  We want to hear about your experience with this partner.
Email us
with feedback on your experience, or make a comment on this blog.

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The more demand there is for autism-friendly sitters, the more likely it is that sites like SitterCity will work hard to find and prepare sitters for the job. We have the ability at MyAutismTeam to use our strength in numbers to help create the market for services like this!  As part of the partnership, Sittyercity has agreed to share some proceeds with MyAutismTeam each time someone becomes a member – thus helping us keep MyAutismTeam free to parents (and free of ugly ads).

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try for free!

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And Get Some Well Deserved Time for Yourself!

MyAutismTeam Discount for Financial Planning, Special Needs Trust

In researching the blog post Special Needs Trusts, Financial Planning & LifeCare Plans – Planning the Future of Your Child with Autism, we spent a good deal of time interviewing two Special Care Planners from Miceli Financial Partners, Nick Homer and Ken Prodger.

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Nick and Ken are based in San Jose, CA and both come highly recommended from other parents on MyAutismTeam.  Both are affiliated with the Mass Mutual Special Care Program, have extensive experience working with families with autism and special needs (one of them is the father of a child with special needs),  and they serve families all through northern California.  As a pilot test of a program that could expand nationally, MyAutismTeam has established a partnership with Miceli Financial Partners that offers full special needs financial planning at a discounted rate for MyAutismTeam parents.  

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Discount Details:
  • If you already have a will in place – Miceli will meet with you in person and do the complete, personalized financial planning, life care plan, letter of intent and special needs trust for a flat $3,000.  That is a discount of $1,000.  Typically the total cost for those services is $4,000.
  • If you need the complete package including a living will, financial planning, life care plan, letter of intent and special needs trust, Miceli will meet with you in person and take care of everything. The discounted price will be $4,000.  That is a savings of $1800. 
  • In addition, Miceli will share a small portion of their fees with MyAutismTeam for each family they serve – helping us keep MyAutismTeam.com a free service for parents of kids with autism.
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Call or Email Them for More Information

Miceli always offers a free consultation – so you shouldn’t be afraid to reach out to them.   They have a dedicated phone line for families with special needs you can call at (408) 487 -1516, leave your contact information and let them know that you were referred by MyAutismTeam.  If you’re not in Northern California, Ken and Nick have said they’d be happy to talk to you and refer you to one of their colleagues closer to where you live.

If you’d like to learn more – call Miceli at (408) 487 -1516.  You can also email them at specialcareplanning@financialguide.com.

Ken Prodger

Ken Prodger is a Certified Financial Planner providing both modular and comprehensive financial planning.  Ken’s area of expertise is financial planning for those families that have individuals with special needs.  His advanced designation (ChSNC) is the only third-party accredited designation for special needs planners.  Ken was the first person in Northern California to receive the designation from the American College and is still only one of a couple in the Bay Area.

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Ken currently is on the Board of Directors for a local non-profit, Parents Helping Parents; an organization helping special needs families in a multitude of areas.  Ken lives in San Jose and has raised a special needs son; he has the firsthand experience of IEP’s, regional centers and service providers.

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As a member of Miceli Financial Partners Special Care Planning Team, Ken has extensive experience with financial planning issues of families that have children with autism.  Ken is a fitness enthusiast and is active in the community and church.

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Nick Homer

Nick Homer is a Financial Advisor and a Special Needs Planner who is a San Jose native, where he resides with his wife.  Nick has been in the financial industry for the last 11 years.   Nick joined Miceli Financial Partners, a comprehensive & holistic planning firm and agency of MassMutual Financial Group, in 2007.   Nick has extensive experience working with families with special needs and is a member of Miceli Financial Partners Special Care Planning Team.

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Nick was instrumental in organizing & bringing Disability Awareness Night to the San Jose Giants and has served on the planning committee for that event for the last 3 years.  This event has provided 10,500+ people the opportunity to enjoy a free baseball game highlighting the awareness of the disabilities throughout the Bay Area.

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Nick also serves on the committee for Disability Awareness Day (DAD) for the City of San Jose.

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In 2012, Nick was asked to serve on the board of directors for Angels on Stage.  Their mission is to provide children with special needs who have abilities of any type and degree, ages 5-22, the opportunity to participate in an annual professional musical theatre production.

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You can reach Ken and Nick at (408) 487 -1516

Embracing the Positives & Exorcising the Negatives around Autism – One Dad’s Journey

In this guest blog post, Tom Wailgum, father of twin boys on the autism spectrum talks about how he and his wife have adjusted their communications with each other and with their boys to focus on the positive. – Eric

Never Never Never Never Never – by Tom Wailgum

One of the most challenging aspects of raising children on the autism spectrum is conquering the feelings of negativity that pervade everyday life. It can come from friends or family members. From co-workers. From the media. From strangers in the grocery store. From yourself. I know I’ve struggled with overcoming my own negativity while raising our twin sons, who are on the spectrum.

Does any of this sound familiar?

  • “He can’t do that.”
  • “She doesn’t have the skills.”
  • “He’ll never eat that type of food.”
  • “That trip to the mall with him was just awful.”
  • “Why doesn’t she get along well with others? What’s her problem?”
  • “We can’t possibly go there because it’s not safe for us.”
  • “Why can’t you guys be like everyone else?!”

By its very nature, the “Autism Spectrum Disorder” label can be a severe limiter to the children, teens and adults who are assigned and often stigmatized by the branding—and it affects the parents of ASD kiddos as well. Think about it: When someone says you or your child has a “disorder,” it’s clearly not the same connotation as saying they have a “gift” or “special talent.” (It reminds me of the “incompetent cervix” label the doctors affixed to my wife when she was in the hospital with pre-term labor with our sons. Hey, docs, thanks for making her feel a lot better!)

Looking back, the negativism that I have allowed to envelope our boys’ diagnoses even colors how I remember the momentous and positive steps that have occurred in their development. Instead of thinking, I always knew they’d get rid of those diapers, I’d think: I never thought they’d stop relying on diapers. (They have.) I never thought they’d have as many friends as they do. (They’ve got some good buddies.) I never thought I’d see either of my kids willingly board a school bus in the morning. (I see it every weekday morning.) I never thought I’d see them up on stage, standing side by side with their classmates, singing in the annual spring concert. (They kicked ass.)

The author’s twin boys at basketball.

Never Never Never Never Never.

It’s so hard sometimes to exorcise the “nevers” and embrace the “positives” and “possibilities.” Perhaps that’s due to what stage you’re at, as a parent, in dealing with your child. Perhaps it’s due to the fact that you are relentlessly focused on identifying and addressing those deficiencies in their skillsets—and then attempting to overcome them. Or perhaps it’s because autism can feel like a blessing and curse at the same time.

The question, then, is: How do you change your outlook when you feel like you’re mired in so much uncertainty and angst because no one appears to have the answers to the many questions you have, when you’re wrapped up in so much guilt or anxiety, and when you’re unconditional love is continually rejected by your child?

Naturally, you’ve got to find your own way out of this nexus of negativity. It starts small, as things often do when the challenge is great. For example, after each outing with our sons, my wife and I will review how it went. For the longest time, it was easy for me point out all of the examples of where the boys had done something wrong (there’s that negativity again!).

My wife and I have made the move to first talk up all the great and positive aspects of their social interactions, play dates or serendipitous Target shopping trips, and then focus on just one thing that could have been done better the next time. For more than a year, we have followed the Superflex “Superhero Social Thinking” curriculum, created by Stephanie Madrigal and Michelle Garcia Winner, to help the boys become aware of more appropriate social behaviors that we want them to understand and apply. We have done this in conjunction with the boys’ teachers, specialists and administrators at their school, and it has been a critical factor in making the Superflex program even more effective.

As you might expect, sharing a common language with our boys, via the Superflex methodology, has allowed us to fill in those critical communication gaps that have always existed between my wife and I and our boys. It’s been an effective way to decrease negative thoughts and alter the tenor of our conversations, from repetitive, frustrating incidents to enriching, positive experiences. The change has delivered significant results—for them and me.

Tom Wailgum (@twailgum) is the father of twin boys on the spectrum, husband to a beautiful and caring wife and mother, and curious observer and cataloger of all that this life has to offer. He’s writing a book about his family’s experiences with infertility, premature babies and autism.  You can read his story and ask him questions on MyAutismTeam.    

Top 8 Autism Therapies – As Reported by Parents of Kids with Autism

(Originally posted as a guest blog on Autism Speaks)

Every parent of a child with autism asks themselves, “Am I doing enough to help my child?”  They look to doctors, specialists, and (particularly) other parents with kids just like theirs for ideas and for validation that they are on the right course.  With more therapies out there than there are hours in the week and dollars in the bank account / second mortgage to pursue them, parents are forced to prioritize.  So what are the “best” therapies out there?  Which ones work best for other kids just like yours?  We asked the world’s foremost experts – parents of kids with autism – that very question.   To be specific, we asked the parents on MyAutismTeam.com - a social network for more than 28,000 parents of individuals with autism – the following question: “What therapies, if any, worked best for your child”?   

Here’s an example of what that question and answer looks like in the story of one mother on MyAutismTeam.  

About one-third of the parents on MyAutismTeam have answered this question and more do every day as it is part of the sign-up process.   What’s beautiful about this question is that it is highly personal.  It doesn’t ask, “What are the best therapies for autism?”  Instead, it asks the parent to list the therapies that work best for their child.   What “works best” for one child on the spectrum may not work at all for another child or, in the case of occupational or speech therapy, need to be significantly tailored to the developmental needs of each child.  Still, there is power in seeing how thousands of parents answer this question.  We counted up all the therapies mentioned.  Most parents answer this question by listing one or two therapies.

Here are the therapies parents reported as working best for their children, rank-ordered by percent of mentions and including only those therapies that received at least 1% of mentions:

1. Occupational Therapy – 39%

2. Speech Therapy – 27%

3. ABA Therapy – 15%

4. Social Skills Classes – 8%

Hippotherapy, or equine-assisted occupational therapy, can be therapeutic for many children with sensory processing disorders

5. Hippotherapy (OT through horseback riding) – 2%

6. GFCF Diet – 2%

7. Psychiatrist/Psychologist sessions – 2%

8. (5-way tie, each with 1%): Floor Time, RDI, PECs, Swimming, PRT

Other therapies / keywords listed that got less than 1% of mentions

  • Mainstream schooling – 0.1%
  • iPad – 0.1%
  • Vision therapy, aqua therapy 
  • Vitamin supplements, Chelation, Hyperbaric Chambers – (all combined these last three terms received less than one-tenth of one percent of mentions)

What Does It Mean?

To be clear we are not doing rigorous science here and this is not meant to be comprehensive research but rather a reflection of what about 8,000 parents said worked best for their child.   Here were a few of my take-aways:

  1. Early intervention is working: OT, Speech,  ABA and Social Skills therapy win the mentions tally in a landslide.  Floor Time, RDI, PECs, PRT and equine-assisted OT (horseback riding therapy) also would be included in that group as they are often led by an OT.  The overwhelming majority of parents surveyed said it “worked best” for their child.  Occupational therapists help children on a wide range of developmental topics including sensory processing disorder, motor skill development, social interaction, potty training, sleep training and much more.  To learn more about occupational therapy and a range of other early intervention therapies download the free 100-Day Kit from Autism Speaks and also read through the long list of other tool-kits on more specific topics such as ABA therapy.  In addition you can check out the Autism Treatments page and video glossaryon Autism Speaks for more background on early intervention.

    Autism Speaks free 100 Day Kit explains most therapies available for autism.

  2. Early intervention services tend to be the ones offered to parents by the state and by the public school systems as they are evidence-based therapies.  ABA therapy tends to be one of the only therapies covered by insurance companies in states that mandate insurance companies to cover autism.  Naturally, more parents are going to have tried these services than some alternative therapies not covered by their schools or their insurance.   For instance, many parents rave about hippotherapy on MyAutismTeam, but share that they are unable to continue it for budget reasons.
  3. That said, many parents on MyAutismTeam have tried out everything possible over the years in their quest to help their children.  Of those, only a handful point to expensive or non evidence-based therapies such as chelation or hyperbaric chambers as being the thing that worked “best” for their child.  Many parents report that in terms of bang-for-your buck, sticking with OT and Speech is best.
  4. Just because a therapy isn’t mentioned on this list doesn’t mean that it doesn’t work.  I want to pro-actively address this issue and prevent an onslaught of comments about all the therapies we’ve left off.  This was an “unaided survey” meaning we just asked the question but didn’t offer a multiple choice list of answers.  We let parents answer this question in whatever they wish and have simply counted up and categorized the therapies that came to the top of their mind as being best for their child.

Find Out What Works Best for Your Child

One key thing to remember here is that these answers reflect the broad range of parents on MyAutismTeam with children from all parts of the autism spectrum.  We all know what works for one child on the spectrum may not do anything for another child with different developmental needs.   The question most parents want to answer is, “What therapies work best for kids just like mine.”   One of the best way to get constant, up-to-date answers on that question is to build relationships with other parents of kids like yours.  You can do that for free by joining MyAutismTeam.  You can click on “Find Parents” and search for parents of kids like yours.  Connect with them, learn what is working for them, and share what is working for you.    If you need a recommendation of an occupational therapist, or speech pathologist, you can see which providers other parents near you have on their teams.    There’s a lot of wisdom in the collective experiences of 28,000 parents of kids with autism.   You’re not alone and you don’t have to re-invent the wheel.

Other useful resource for learning about early intervention and autism therapies include The Thinking Person’s Guide to Autism and the CDC’s Autism Page.

Temple Grandin on the Importance of Giving Kids with Autism a “50’s Upbringing”

Friday night I had the honor of meeting Dr. Temple Grandin – the noted cattle expert, autism authority, and one of the most famous and successful people on the autism spectrum.  We were both speaking at the US Autism & Asperger Association Conference in Denver and when we met at the speaker’s dinner I told Temple, “I am the co-founder of MyAutismTeam – a social network for parents of kids with autism.”

“Ohhhh” she said.  “Do you know what worries me most about parents of kids with autism these days? They’re not making their children learn enough important job skills!”  And with that, she launched into her case, elaborating on what she means.  “I’m seeing more and more kids, a lot less severe than I was, graduating college without any job skills – and they are ending up living on social security!”

Other speakers started gathering around us to listen as she held forth.  She attributes a lot of her own success to what she calls a “50’s Upbringing” from her mother – a parenting style invoking teachable moments, stretching your kids, and inculcating manners, basic social skills and independence early.  It’s a parenting style she wishes would make a return today – particularly among parents of kids with autism.  I should say that on this particular topic Dr. Grandin is focusing in on kids from the higher functioning end of the autism spectrum and although she refers to herself as an “Aspie” she is quick to point out that she’s come a long way from where she was developmentally as a little girl.

What is a 50′s Upbringing?

Dr. Grandin summarized a “50’s upbringing” as learning the following:

  • Turn taking in conversation and activities (such as board games)
  • Being on time
  • Doing family activities (even ones she disliked)
  • Doing things that pleased other people
  • Manners (saying please and thank you)
  • Rules (particularly learning why her social mistakes were inappropriate)
  • That there is consistency between parents and school – e.g. a tantrum at school translates into no TV at night
  • Basic social skills
    • Shaking hands
    • Eye contact
    • Ordering food in restaurants
    • How to shop
    • “Eccentric is ok, dirty and rude is not”

Examples from Her Own Life

Temple Grandin speaking at USAAA

Dr. Grandin shared several examples from her own life to try to clarify.  I’ve tried to capture those here to share with you (all paraphrased so I won’t put them in quotes.)

  • Learning job skill needs to start early and the transition from learning to working full-time needs to be gradual.  The best way to do that is to always be doing some kind of work where you can learn a job skill.  For me that started as a girl.
  • Mother made us properly shake hands with everyone we met, and look them in the eye.  I’m appalled at how many kids I meet at book signings who don’t know how to shake hands.  You either get the “vice grip or the dead fish”.  Kids need to be taught how to shake hands, and how much pressure to apply when they shake hands.   That’s a teachable moment.   When I was six, Mother made me put on my church dress and serve hors d’oeuvres to our guests – she taught me how to look people in the eye and do something nice for others.
  • When I made a social mistake, was rude, or misbehaved – mother would teach me why (teach me the rule) rather than scold me or say, “No, no, no.”  If I pointed and made a rude comment about an overweight person at the story mother would say, “Temple, it is rude to point at people and make fun of their appearance.”   If your child goes behind the cashier’s counter at the store, replace “No! Johnny come back here right this instant!” with “Johnny, only the clerks can go behind the counter.”  Use the teachable moment.
  • Mother always made us try new things.  At age 13 she got me a job sewing.  I was learning a skill and earning money.  Later, when I was in high school I got my own job cleaning horse stalls and working with horses.  I was learning a skill and becoming very familiar with working with animals.
  • When I was in college I had to rent a house, negotiate rent and live with a roommate.
  • I learned you have to build up and carry with you a portfolio of work.  You never know when you are going to get a job opportunity.   In my first job I used to paint signs.  With each completed sign I could show it to the next potential customer to get another sign to paint.  Later, (as I was getting my consulting practice to the cattle industry off the ground) I used to do tiny consulting projects with the smallest cattle ranches.  I was learning on each one and then I could show that work to the next person.   People thought I was weird, but they respected my designs.  Today you can carry your portfolio on your phone.  (Reader Note:  Incidentally, half the cattle in North America now are handled in a facility using one of Temple Grandin’s designs).

Dr. Grandin elaborates with more examples in her own post and her many books, which are well worth the read.

A Challenge to Parents

This was not a light conversation.  When Dr. Grandin talks in person she doesn’t mince words and she speaks about this topic with the genuine fire in the belly of someone trying to jumpstart a movement.   To be clear, she does not like what she’s seeing.  She wants to encourage parents of kids on the spectrum to make sure they stretch and teach their kids more, get them to try new things and learn new skills (even if the kids don’t want to do it at the time, and even though they may fail at it initially).  She passionately believes it’s never to late to start.

My meeting with Dr. Grandin left me inspired and is causing me to seriously examine how I’m raising my own two neuro-typical children.  I know I could utilize a lot more teachable moments with them than I do currently, and I’m not so sure I stretch my kids and let them safely “fail” enough.   You can weigh in on this topic.  To learn what other parents of children with autism are doing to teach job skills, or to share some of your own teachable moments, please join MyAutismTeam.   It’s free and this invitation is open to parents of “children” of all ages.  Of the 28,000 parents on MyAutismTeam about 35% are parents of teenagers or adults on the spectrum.

Meet MyAutismTeam In Denver Sept. 6-9, 2012

Meet Us At the USAAA Conference

The US Autism and Asperger Association conference starts Thursday Sept. 6th and concludes Sunday Sept. 9th. Among the many notable speakers, like Temple Grandin, MyAutismTeam co-founder & CEO Eric Peacock will be presenting “10 Lessons Learned from 25,000 Parents”  on Saturday at 1PM.

There is still time to register,  USAAA Members, Students, Military, Individuals with ASD, or PARENTS WHO BELONG TO MyAutismTeam get a significant discount off registration! Get a jump start, and register today!

School’s Out for Summer — But Fears of Regression Looms for Parents of Kids with Autism

“I Hate Summer” was a recent post by Laura Rossi Totten on The Huffington Post. She writes,

Special Needs Parenting is challenging 365 days of the year. Unlike the shorter winter break or spring vacation, summer is unique because it is long and most special needs children now expect the routine, support, predictability and familiarity of the school year. Frequently, school-age special needs children struggle with the concept of time and that contributes to the confusion and anxiety many children experience during these three months.

What’s a parent to do? What options exist?

For parents who are looking for ways to keep their kids progressing (whether they’re Aspies, high-functioning, or non-verbal), there are few inexpensive options to turn to during the summer months. We recently spoke with Robyn Catagnus, EdD, BCBA-D of Rethink Autism to learn more about the online curriculum they offer parents.

MyAutismTeam interview with Robyn Catagnus, EdD, BCBA-D of Rethink Autism

Q:  The ultimate “transition strategy” by Dr. Peter Gerhardt, President and Chair of the Scientific Council at the Organization for Autism Research — a behaviorist who has taken part in a webinar for Rethink Autism — has been emulated by therapists around the country:

  • If you can teach the skill, teach it
  • If you can’t teach the skill, adapt it
  • If you can’t adapt it, figure out some way around it
  • If you can’t figure out some way around it, teach the neuro typicals to deal.

How does this apply — if at all — to the type of online curriculum Rethink Autism offers parents, which they leverage at home with their own kids?

Rethink Autism also begins with an effort to teach skills directly. Our program includes lesson plans and videos that demonstrate how to teach every skill in an entire curriculum for areas such as expressive language, receptive language, social and emotional, play and leisure, pre-academics, early academics, daily living, and motor skills. Every lesson and video has several ideas for adapting the skill or instruction specifically for your child. The program offers many ways to think systematically about your child’s needs, and allows for simple, effective data collection so you can see how things are working.  The ideas and repeated practice with teaching helps parents figure out ways around issues that arise. The Behavior Tracker module in Rethink Autism is another great tool to work around behaviors by assisting parents with identifying patterns and providing support and interventions based on that information.

Q: What kind of parent most benefits from Rethink Autism?

Any parent who wants to help their child learn new skills or decrease problem behavior could benefit from Rethink Autism. Parents can use the strategies even if they are beginners with ABA, and the program can be used as a source of ideas and everyday strategies, or as an intensive behavioral intervention program.

Q: Is this the same as homeschooling?

Rethink Autism does not require homeschooling. It is a curriculum to address the intervention needs of learners with autism spectrum disorders. It includes easy-to-use lesson plans, videos, data collection tools, reporting, and behavioral tracking and assessment tools. Those strategies and tools can be applied in any learning setting – home, community settings, public school, pre-school, home school, and more. It even helps parents and professionals communicate and document intervention across all those settings, empowering the parent to see all their child’s information and participate in teaching and programming.

Q: If my child has never been introduced to ABA therapy techniques, what should I expect?

You can expect your child to enjoy learning and develop new skills! Positive reinforcement is an important part of teaching with these techniques, so parents learn to engage children in a fun, educational way. Our videos show many strategies that help children learn quickly and effectively, while making very few errors. It is more fun to learn when you are successful and receive recognition or rewards for your efforts. The strategies are also very systematic and thoughtful in order to maximize learning every day. Even if you and your child have never been introduced to ABA, you will find the lessons very understandable, easy to use, and effective.

Q: Is this for parents of young children only? Or only parents of kids who are verbal?

Our lessons address a wide range of skills, abilities, and behavioral needs for children from age 18-months through early adolescence developmentally. There are lessons for children who communicate vocally or non-vocally. The first step is a brief assessment to determine the skill level of your child in various domains, and the program recommends lessons personalized for their needs. The curriculum ranges from skills needed by early learner for the very basics of communication, social interactions, or problem behavior- and the lessons progress gradually to address complex skills in every domain. As your child develops, the program grows and changes with them!

Q: What tips do you have for parents just starting with Rethink Autism’s online curriculum?

I recommend that you start with a few lessons, perhaps two or three. Select lessons that you and your child are likely to do well, leading to success. Be patient with yourself and your child. Most importantly, stick with it! After some practice, the process becomes familiar and comfortable, so you can expand, teaching more lessons and challenging your child to learn even more.

Q: What is Rethink Autism, not?

Rethink Autism is not meant to be a substitute for services or support by a trained autism expert or board certified behavior analyst. Ideally, when possible, our program can be used as a way to enhance team coordination and enhance any direct services a child receives. It is critical to have a clear path of learning, data for decisions, collaboration, and excellent teaching. Rethink Autism provides parents with the tools to ensure these elements of successful intervention for their teams.

Q: What can parents expect after a few months?

Expect to notice your child demonstrating new skills and having fewer problem behaviors. Using Rethink Autism works and parents around the world see meaningful changes after just weeks or months. When your child is learning and there are fewer problem behaviors, it really makes family life easier and more enjoyable. Such outcomes can be life changing for everyone in the family.

Rethink Autism has offered parents from MyAutismTeam a special discounted offer: 25% off the quarterly package price. In the promotional code field, simply type:  MAT25  to receive the offer. You’ll receive a 3-month curriculum to use with your child for less than $180 (plus, a consultation call free of charge). The regular price is $240.

If you try this service offered by Rethink Autism, let us know if it’s helped your child this summer. If it’s effective at helping your child progress, definitely add Rethink Autism to your provider team. We welcome your feedback on all services we bring to the community. MyAutismTeam strives to provide services and products at discounted rates for our parent community. Thank you for your continuous feedback and participation within the MyAutismTeam community.

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