An Honest Look at the Full Experience of Autism with Russell Lehmann

Motivational Speaker and Poet Russell Lehmann joins us to share his perspectives on autism and the human condition. Having spent most of his life in isolation, Russell has found his voice and independence in recent years. His passion for erasing stigma and stereotypes about autism is shared through his moving, spoken-word poetry. As Russell shares, “I like to say you hold up a mirror to anybody, and that’s what autism looks like. I don’t expect anyone to be able to tell that I have autism just by looking at me. But hopefully, someday they won’t be as shocked to find out.”

All Autism Talk (https://www.allautismtalk.com/) is sponsored by LEARN Behavioral (https://learnbehavioral.com).

The September 26th Project: Safety Preparedness for Families with Autism

The September 26th was created to honor the lives of a family that was tragically lost in a home fire. By providing safety awareness and preparedness resources for families the mission of this initiative is to review their safety plans every year on September 26th and use their checklists to be prepared. Kelly also commented on the importance of caregivers to support safety preparedness and awareness. As she said, “If a child can’t get out of the house in the event of a fire, were the other goals addressed important?”  

For More Information: 

Visit their website: https://www.september26.org/ 

Download the Fire safety check-list 

Download the Natural disaster checklist 

Download the Wondering prevention checklist  

Download American Red Cross Emergency apps here  

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com). 

February Digest

Welcome to our All Autism News series! Whether you’re a parent, advocate, professional in the field or individual with autism, All Autism News is here to give you a summary of this past month’s biggest news stories affecting the autism community.

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National News

New U.S. autism guidelines call for early treatment
Spectrum – Pediatricians should start treating children who show signs of autism even before tests confirm a diagnosis, according to the newest recommendations from the American Academy of Pediatrics.

Autism prevalence in the United States explained
Spectrum – The rise has sparked fears of an autism ‘epidemic.’ But experts say the bulk of the increase stems from a growing awareness of the condition and changes to its diagnostic criteria.

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Research

Study ties gene active in developing brain to autism
Spectrum – Mutations in a gene called ZNF292 lead to a variety of developmental conditions, including autism and intellectual disability, according to a new study.

A Quarter Of Kids With Autism Go Undiagnosed, Study Suggests
Disability Scoop – A substantial number of children who meet the criteria for autism are failing to receive a formal diagnosis, according to a new study based on data from the Centers for Disease Control and Prevention.

Early life experiences may shift severity of autism
Spectrum – A child’s environment exerts a strong influence on the severity of her autism, according to a study of 78 pairs of identical twins in which at least one twin has autism.

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Teens & Adults

When My Daughter on the Autism Spectrum Asked Why I Was Crying
Yahoo! – My daughter, who is 8 years old, is on the autistic spectrum. She was diagnosed over a year ago, has been in ABA therapy for about eight months, and has been making slow but still steady progress. However, that doesn’t exempt us from bad days. Yesterday was one of them.

Intelligence, behavior shape adulthood for people with autism
Spectrum – Just two factors assessed in childhood predict how well people with autism will function as adults, according to a new study: intelligence quotient (IQ) and behavioral problems such as hyperactivity.

Early Treatment for Autism Is Critical, New Report Says
The New York Times – The average age of diagnosis is now around 4 years, but the goal is to get it well under 2, she said. And children who are at higher risk — for example, those whose siblings have A.S.D. — should receive especially close screening and attention.

With Blog, Teen with Autism Gains Voice
Disability Scoop – A few years ago, Mitchell Robins wasn’t able to tell anyone precisely what he was thinking. He lost the ability to speak when he was 4 and relied primarily on a system of pictures and limited sign language to tell his parents and caregivers what he wanted to eat or when he felt sick or how he wanted to spend his time. Then his parents realized he could spell.

Siblings of autistic children may have distinct facial features
Spectrum – Siblings of autistic children, like those with the condition, tend to have faces that are more masculine than average, according to a new analysis. The analysis classified features such as a wide forehead and long nose as masculine.

How can Parents Embed Language?

Many people think of speech-language pathologists (Speech Therapists or SLPs)as professionals that work with people to improve their speech (also called articulation or fluency), but a big piece of SLPs job is to help children with language development. Language is so important for individuals to function in school and life. When children have a developmental delay that impedes their ability to effectively communicate, SLPs work with parents, teachers and other caregivers to develop strategies that improve language acquisition.

Children learn language and communication from their environment and from their experiences and interactions with the people in their environment. Studies have shown that on average, about 90% of the words used by children by the age of three come from their parents’ vocabularies. Children imitate the number of words spoken, the length of conversations and the speech patterns of their caregivers.

This is why it is so important for parents and caregivers to actively engage their infants and children by talking to them as much as possible. The number of words a child hears per day will greatly impact their vocabulary and their language development, and ultimately this impacts success in many other areas for children as they develop. It does not need to be complicated- simply noticing your environment and commenting on it to your child is all it takes to stimulate your child’s learning of language and communication. It’s the frequency that matters.

One of the easiest ways to encourage the learning of language and communication is by encouraging talking during your normal, daily routines. Activities such as bathing, dressing, mealtimes, cooking, doing laundry, going for a walk, driving in the car, and grocery store shopping are all typical daily routines and activities during which you can embed all kinds of important skills that we want kids to learn (see reverse for 10specific ideas).

Below are ten specific skills related to language development with examples of how to insert those into daily activities:
1. Joint Attention Skills:

When looking at pictures, reading books, or even just playing with children, it is important that the child looks at the object, picture, or toy that you are talking about. This ensures that the child is listening and is able to understand the object or picture being labeled and described.

2. Turn-Taking:

Teaching children to respond to physical and verbal directions sets the stage for understanding how to share between two people. For example, when playing with a toy car, if the parent pushes the car to the child and says “vroom-vroom”, the parent waits for the child to respond by pushing the toy car back to them and imitating the sound.

3. Language Stimulation:

During all kinds of daily activities, talk to your child about what you are doing, seeing, hearing, etc. in your environment.

4. Play Skills:

Through play, children often show us what they understand about the world. This is how children discover and learn about objects, people and the world around them. Play with your child often and talk as you play about what you are doing.

5. Fill in the blank:

Set up a predictable, language routines, for example, set up a familiar phrase and purposefully leave out the last word, i.e., While singing “the wheels on the bus go round and ____, round and _____.” Or while reading “brown bear, brown ____.” Gradually make the task more complicated, i.e., during a favorite book, you can exclaim, “Oh, no…look…Clifford is laughing…he feels ____.” Prompt your child by looking at them and waiting for them to reply. Once you do this a few times, they will catch on.

6. Provide choices:

Provide choices instead of asking questions so your child does not have the option of answering “no” when you want to stimulate interaction. Instead of asking your child “Do you want to play with your cars” ask “Do you want to play with your cars or train?”

7. Picture walk: 

It is not necessary to read every word in a book as they can often be too wordy and confusing for the early learner. Instead, encourage your child to look at the pages and guess what is going on. Set up a familiar structure to help your child express herself—go through the book and point out familiar nouns/verbs using the phrase, “I see___”… “I see a puppy.” “I see a sun” while pointing to the object. Next, take your child’s finger and put it on an object you are sure he/she is familiar with and use the fill in the blank procedure “I see a _____ (CAT!)”.When your child becomes familiar with the routine, he/she will begin to say the phrase by herself. This sets up the routine of “my turn-your turn”.

8. Out of reach:

Put desired objects in out of reach places to encourage your child to request and ask for help. A natural instinct for parents is to make everything easier for their child—but many times we are actually doing a disservice when we anticipate our child’s every need. Once a child realizes the power of language, they will talk for what they want.

9. Confusion:

This can get your child talking and it is a nice time to introduce early language concepts in a very concrete way. So—the next time you are at the table and your child asks for peanut butter—give him regular butter instead. Wait for him to tell you that this isn’t what he asked for—at that point you can say “But, Didn’t you ask for butter?”—“NO! PEANUT butter mommy!”—“Oh, I get it now. Peanutbutter and butter are the same in a lot of ways—we can spread both of them on bread, they are both soft and they both have the word “butter” in them! But, they are also very different…peanut butter is a darker color—more like a light brown—and it is sweeter.”

10. Ask and then, Listen:

Once your toddler is talking, start teaching them to initiate conversations, and listen, a lot. You will be surprised once you stop talking about how much more your toddler will talk. This will give your child an opportunity to practice initiating communication and then you can let your child take the lead. Initiating conversation lays the groundwork for many social skills that are so important for future development.

-by Amy Hill, M.A., CCC-SLP and Ronit Molko, Ph.D., BCBA-D

Our amazing daughter

Autism is a diagnosis that can be emotional for parents and families to accept. In our case, the diagnosis needed to be accepted by our family. Our daughter is amazing. She is incredibly bright, sweet, and an absolute joy to be around. As a parent, one of the most gut-wrenching things we experienced was being told time after time, “Your child has challenges, but no one knows why.” In May of 2013, we finally got our answer. Our beautiful girl has a rare genetic condition called Cohen Syndrome that causes intellectual, medical, and physical disabilities. Receiving this diagnosis was bittersweet because we finally got an answer, but we still didn’t know how to help our daughter. With a rare genetic condition like this, there are several programs, specialists, and therapies available that we didn’t even know existed. There are people with resources who wanted to help but had never heard of our child’s condition. It was very alarming for us because even though we were thankful for their help, the process can be anxiety-inducing.

When our daughter was diagnosed with Autism a year ago, it wasn’t a bittersweet moment like when we received her original diagnosis of Cohen Syndrome. It was just sweet! Autism Awareness has been raised, and there are people in the education and medical field who have experience with Autism. I fully accept that our daughter has Autism, but the fact is that a lot of her challenges stem from her primary diagnosis that is rare. I asked myself how this “known” diagnosis could help when you have to take her “unknown” diagnosis into account? The answer was ABA therapy.

Although we have seen AMAZING progress through ABA therapy in our daughter over the last year, the truth is that it cannot be contributed fully to “just” ABA therapy. ABA therapy with the right team is the answer. What makes the right team? Compassion, humility, resource-connected, knowledgeable, and experienced team members. ABA is an evidence-based practice.

We know firsthand that having a team that is compassionate and humble will allow for success. Having a child with complex healthcare needs is overwhelming. We almost always feel like we aren’t doing enough (are we acting more like advocates instead of just being mom and dad? Is our child receiving the right therapies, too many or not enough? How can we balance comfortability for a child whose world is almost always uncomfortable, but also push her to reach her full potential?). Adding ABA therapy to our already crammed schedule brought apprehension. But having the right team, takes the stress out of the equation. We (parents, child and staff) work together on proper goals and time management.

ABA is an excellent tool that I highly recommend families consider, but it’s not the only tool. Especially when working with a child who has a rare genetic condition plus an Autism diagnosis. Other resources and tools may assist families in achieving their goals. For us this meant learning about the objectives as a family together while our daughter was mastering goals. ABA works best when it’s combined with your other resources; (i.e., current therapies in place, IEP teams, community support, etc.) as this helps generalize what is learned. We have seen our daughter transfer the skills she’s learned in her sessions into her everyday life. Our daughter, recently turned eight years old, received a skilled companion dog, and is transitioning to a general education classroom. This transition and the skills that her amazing ABA team teach her have been a blessing to her, and our family. Our daughter has been showing more affection to those she cares about. She’s able to master her goals outside of her sessions and into the community (which I am unable to express how HUGE this is). She is also able to complete her homework with modifications; additionally, she can share who she is with others instead of allowing her diagnoses to define her as others think it does.

From a logical perspective, ABA therapy is remarkable in how it allows children (no matter what the diagnosis is) to learn things that other children may more readily know. From a mom’s perspective, it’s beyond amazing. This process has provided my husband and me with the support needed so we can be her parents, instead of her providers. Partnering in this way gives us opportunities we wouldn’t be able to have without this kind of assistance. There’s a saying that it takes a village to raise a child. In the early days of our daughter’s life, my husband and I would jokingly say it takes a hospital to raise our child. As her health has become more stable, and we’ve been able to focus more on her education and life skills, we agree that in fact, it takes a village to raise a child — a properly equipped village. And we are so grateful that God blessed us with her ABA team as an addition to our village.

– by Nicole

Every Child Deserves a Champion

April marks Autism Awareness Month and as we contemplate the meaning of this time, we are reminded of a quote that begins, “Every child deserves a champion”.  It strikes a chord because I think each of us can recall a moment where a teacher, a family member or someone in our community made a difference in our lives.

As parents and professionals working with children with special needs, we see it on a whole other level.  Champions are most commonly seen in the fierce determination and strength of the parents who work tirelessly to ensure their child’s rights are honored, their needs are met and their therapy schedule is adhered to.  We also see champions every day in the faces of therapists who passionately execute their job not only with clinical excellence, but with love.  Champions can also come in the form of young siblings who play with, defend and celebrate their special needs siblings – enlisting advocates in their classrooms and on the playground.

And then their are our kids and adults with autism who teach us every day that they are extraordinary, brave, different (but not less), intelligent, loving, funny, kind…and uniquely wonderful.

For all of us who know how profoundly changed we have been to know or witness a champion, let this be our cause for the month of April –  May we help bring awareness so that others can know what we know.  So that they too, can champion a child.

“Every child deserves a champion—an adult who will never give up on them, who understands the power of connection, and insists that they become the best that they can possibly be.”   -Rita Pierson

Here are some resources you can share with your community this month (and all year long):

All Autism News

All Autism Videos

All Autism Talk

In Touch Newsletter

Autism Awareness Continues

As the saying goes, “If you have met one person with autism, you have met ONE person with autism”.  If you have talked with different members of the autism community during autism awareness month, you have likely had very different conversations about our experiences and what we hope might come from this month.  Some will share the need for greater understanding, compassion, and inclusion.  Others might point to the need for more investment in research and access to services.  Some parents align strongly with specific organizations and messages while others carve their own path.

Ultimately, there is no “wrong” way to share your voice and your story.  As we honestly offer our perspective and experience, we add to the collective awareness (acceptance, support, action…) that we all hope to inspire.

Whether you are at walks, sharing or seeking information in your community, wearing blue or not.  We celebrate the diversity of our community and the way in which we all contribute to the cause of enlightening our world about the amazing abilities and challenges we all have the opportunity to support.

Here are a few exciting “wins” for our community currently taking place.

  • Companies like Microsoft and STEM are beginning to create practices for hiring individuals on the spectrum while organizations like Specialisterne and ASTEP are assisting more companies to follow suit.
  • The momentum of research continues to build and there is a lot of optimism about how the emerging information could support faster identification and better support for children with autism.
  • Technology is playing a big role in communication as well as how services are delivered.
  • Recently, Hawaii, Mississippi and Georgia became the latest states to pass autism insurance reform.

Read more about the news stories listed in this blog on www.allautismnews.com