Have you ever had a moment when your child did or said something awkward in public? Then, the response from people around you was less than favorable? How did you respond? A situation such as this happened for us recently. As a result, I had an “ah-ha” moment, as an Autism mom, ally, and advocate.
 
Recently, we were attending a community festival. My daughter “Amazing Grace” initially chose to play in a jumpy house area made for younger children (0-5) instead of the larger and more challenging jumpy obstacle course made for children her age (6 years +). After a while, I encouraged Grace to try the other area which was more age-appropriate. I could feel the eyes of the person monitoring the jumpy. I imagined that she wondered, “Why does this 8-year old want to play in this small jumpy?” and “Why is she having such a hard time leaving upon request?” At this moment, I realized that I had two options: I could become upset or offended or I could use this as a teachable moment. On this day, I chose the latter. I began to inform the jumpy monitor about Grace and her unique challenges related to Autism. The young ride operator was very grateful, as she had no understanding or knowledge about Autism Spectrum Disorders (ASD). 

After giving Grace a 5-minute countdown, she was able to transition to the larger and more challenging jumpy obstacle course. She had a blast! She slowly built her confidence and was able to successfully navigate the play area along with her peers. (The next challenge was getting her to leave this play area 😉)
 
The incident at this festival is just one example of how we can turn those awkward moments into teachable moments. As parents and allies, we want everyone to embrace Autism…moving from awareness to true acceptance. However, some people are truly ignorant when it comes to the challenges and great strengths of our kids and young adults. How can we expect the world to know more and make better choices if we don’t educate them? This is my epiphany, although the implementation is a work in progress….
 
Parents let’s continue to advocate strong for our kids with unique needs. If not us, then who? 

Do you ever wonder what goes on in your child’s mind? Or, if you are parenting a teenager, maybe you don’t want to know...I think every parent wonders what their child is thinking at times, especially when they are infants or toddlers. However, for the Autism parent, this feeling happens much more often and for a longer time span...maybe throughout their childhood or even into adulthood.  
 
I can remember working with a family once and the mother told us a devastating story at her son’s IEP (Individual Education Program) meeting. She shared that her greatest concern for her son was for him to be able to tell her about his feelings. Her son was an eight-year-old at the time who was significantly impacted by Autism and minimally-speaking. One night, when helping him with his bath, this mom noticed that her son had a terrible scratch on his leg that looked as though it had happened that day. He winced as she tended to his injury. This mom realized that her son had been injured somehow that day and was unable to tell her that he was sad, hurt, or in pain. She cried as she told us this story at the IEP meeting, and inside I cried for her, too. This was many years ago, before my own daughter “Amazing Grace” was diagnosed with Autism Spectrum Disorder.
 
Language and communication are one of the hallmark areas of challenge for individuals with Autism. This can manifest differently from one person to another. It can be as significant as being unable to tell someone that you are hurt. However, for individuals less impacted by Autism, many still struggle to effectively discuss their feelings and the feelings of others. Though their academic vocabulary may be strong, beyond their peers, many individuals with Autism have a very immature emotional vocabulary. 
 
I recently had a moment with my daughter that typifies this concept. For several years, Grace has expressed her distaste for me when I coo and “talk” to babies that we see in stores, at parks, etc. She has mentioned to me that I should not talk to babies as that is “not my business”. However, recently when this situation occurred, Grace was able to use words to explain to me her truefeelings for the first time. She told me that when I engage with babies, she feels “sad and unloved” and she further asked “Mom, you do still love me…right?” My heart sank to think that Grace felt this way, while also feeling relief because I finally knew what had been bothering her all this time. 
 
What can we do to help?
If your child with Autism struggles to share their ideas, thoughts, wants, or needs, here are a few ideas to help…

1. Offer a variety of visual supports: Consider high-tech supports, such as a communication device or app. Or, low-tech supports, such as pictures, real objects, or a good ole pen and paper. 
2. Give them wait time: As simple as this may sound, it can be quite challenging to offer your child 5-10 seconds of wait time after asking a question. However, this additional time might be just what your child needs to formulate their response. 

 
One of the greatest challenges in parenting a child with Autism Spectrum Disorders is the struggle with communication. However, with persistence, patience, and love, it is possible to effectively support our children while helping them find their voice. 
 
 References: autismspeaks.org

When you hear the word IEP, what do you think? A bunch of fancy words that you don't understand? Another opportunity to hear about how well your child is not doing at school? Do not fear fellow special needs families. There is HOPE!

When I hear the word IEP (Individual Education Program), I think "Here is a great opportunity to develop and monitor a plan specifically for my child's success!" Now where, you may ask, does my optimism come from? Well, after twenty years of working in special education in the public school system and five years of attending IEP meetings for my own child, I have learned a few things. Let me share a few tips with you...

1. Start with the end in mind. 
Remember that the ultimate purpose of your child's IEP is to prepare them for "further education, employment, and independent living”. Even as early as preschool, we need to keep this in mind as we develop goals and plan for the future. 

2. Document, document, document.
As quoted by one of the leading authorities on special education law and advocacy, "if it isn't written down, it didn't happen" (Pete Wright, wrightslaw.com). Documenting your conversations and concerns is the best way to keep IEP teams accountable. In addition, this will help you to streamline your efforts in monitoring progress and may save your sanity. For example, when you pick up your child from school and chat briefly with your child's teacher about a problem behavior that arose that day, you may want to follow up with a quick email to recap the conversation. If the behavior becomes a recurring issue, you'll have documentation to review to help you help your team in developing smart solutions. 

3. Don't go it alone!
If at all possible, always attend an IEP meeting with someone. The law allows you to invite individuals who have knowledge or special expertise about your child. As the parent, you get to decide who meets this criteria. You may invite one of your child's private therapists, your Regional Center case worker, or your parent as an example. Having another set of eyes and ears present at an IEP meeting relieves you of pressure and allows you the freedom to listen and absorb the  information.

So, the next time you hear the term IEP, don't be afraid. Remember that an IEP is an excellent opportunity for you to make a positive impact on your child's academic progress. Document everything as much as possible and enlist your support network for assistance. 

References: https://sites.ed.gov/idea, wrightslaw.com, understood.org

​In 1943, Dr. Leo Kanner first described Autism as related to children in the U.S. At the same time, Austrian pediatrician Hans Asperger was working with and learning from children in his country. Asperger's syndrome (referred to as a milder form of Autism) was named after him.

From that time until now, much has been discovered about Autism Spectrum Disorders (ASD). However, myths continue to surround this condition which adversely impact children and families. Let's discuss and hopefully dispel three myths related to Autism...

1. Girls don't have Autism...
So, as the proud parent of a wonderful young lady with Autism, I must say that this is definitely a myth. However it is true that statistically, boys are more often diagnosed with Autism when compared to girls. The ratio is about 4.5:1.

Another factor impacting girls is severity of impact. Girls with more significant challenges (very limited speech, multiple repetitive behaviors, obvious behavior differences) are usually diagnosed as young children. However, girls with "high-functioning" Autism or "Asperger's syndrome" may not be identified until their teen or adult years. Why, you might ask? Likely because some symptoms of Autism are overlooked in girls as they may be seen as "typical girl behavior" if not investigated in depth. These include: allowing other girls to guide and speak for her at school, being quiet/shy, passivity in group settings, separation anxiety and limited conversation skills.

2. All individuals with Autism have a special skill...
If you are 40 or older, then you'll probably remember the 1980's movie Rain Man starring Dustin Hoffman. This was one of the first U.S. movies bringing attention to Autism. However, as a result I believe that it has also perpetuated the myth that all individuals with Autism have a special gift, a savant-like quality that comes naturally without any formal training. Maybe phenomenal piano skills or the ability to memorize maps instantly.

Here is what research suggests: Only 10% of individuals with Autism have some savant abilities as compared to only 1% of the general population without Autism. These abilities range from “splinter skills” to superb savant skills. Typically, these skills are seen in math calculations, memory, art or musical ability. In our experience, our daughter has an amazing memory. She can remember events, names of people and experiences from long ago that most of us in the family have forgotten. However, I would say that this is a "splinter skill" and not a true savant-like ability.

3. Individuals with Autism do not like to engage with others...
It is true that individuals with Autism often prefer solitary play and struggle to interact with others at the same level as their "neuro-typical" peers. We noticed this early on in our daughter "Amazing Grace". At age three, she would easily spend time playing by herself and would not seek interaction with us, except when she had a need (such as food or toileting).

However, although the amount and quality of their engagement is definitely different, I believe that most individuals with Autism do have an interest in social interaction. Two factors that impact their engagement with others are 1. special/restricted interests and 2. limited perspective taking skills.

First, individuals with Autism typically have an area of special interest that takes much of their thought and energy. These interests may result in limited time or energy available for engaging with others. Also, the individual with Autism may find it as a "waste of time" to interact with those who don't share their special interest. This does not mean that they do not want friends or social interactions. It just means that they would prefer it on their terms so that the interactions are meaningful.

Theory of mind or "perspective-taking" skills also impact an autistic individual's ability to interact with others. If you have difficulty understanding what people are thinking and why, then interacting with them can be very challenging and overwhelming. As a result, many individuals with Autism shy away from social interactions for fear of not understanding something or making a mistake.

Let's erase Autism myths...let's support children and families with early identification, intervention and most of all, acceptance. Thanks for reading and sharing!

References:
Interactive Autism Network (www.iancommunity.org); Roger Ebert's review of Rain Man (https://www.rogerebert.com/); Autism Research Institute (https://www.autism.com/)

​Have you had "the talk" with your child? I am referring to a discussion about your child having Autism 😉. Many Autism parents like myself begin to contemplate having "the talk" as our children enter the mid years of elementary school. Others wait until adolescence or young adulthood. Let's briefly discuss the pros and cons...
Pros:
Disclosing to your child can be empowering for them. It can help them make sense of their known strengths and challenges. Disclosure can also support your parent/child relationship. Many individuals diagnosed with Autism as adults report feeling resentful towards their parents initially because their parents did not address the issue early on.

Cons:
Disclosure could initially evoke feelings of fear, anger or sadness. Also, older children could begin to use the diagnosis as an excuse for certain behaviors.

Tips: 

• Begin when your child is young by having a family discussion about everyone's strengths and challenges. This will create a healthy and accepting atmosphere to add Autism to the discussion as your child gets older. 
• Involve a trusted professional to assist you in disclosing an Autism diagnosis to your child. Your child's speech pathologist, behavioral therapist or psychologist/psychiatrist would be a great person to team with since your child is likely already familiar and comfortable with them.
• Use books to assist in the disclosure discussion. Here are a few:                                     ​~The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) by Elizabeth Verdick                                                                                                                                ~The Asperkid's (Secret) Book of Social Rules by Jennifer Cook O'Toole

​
As you already know, each child with Autism is an awesome individual, to say the least. That being said, what works for one child or family may not work for yours. As you contemplate talking to your child about Autism, be encouraged! Trust your gut and make the decisions that work best for your child/family.  Remember that clinicians and fellow Autism parents like myself are here to assist. Feel free to reach out for more information...

References: Indiana Resource Center for Autism (www.iidc.indiana.edu)

As a parent of a child with Autism, I know that we are always searching for a support, resource or strategy to help our children become the best they can be. Have you. like me, considered making dietary changes to help your child? Let's dive into the research and learn more about this topic...

First of all, we must all remember that each individual with Autism is truly unique. So, what works for someone else's child may or may not work for your child. Most experts recommend a strict trial of at least three months in order to determine if a special diet will help your child. If there are no improvements after three months, you can feel secure that you have made a good effort without a major financial investment.
 
Popular diets for individuals with Autism include:

• Gluten-free diet (gluten is a protein found in many grains; this diet eliminates such grains)
• Casein-free diet (casein is a protein found in milk; this diet eliminates milk and all by-products of milk)
• Feingold diet (eliminates additives and chemicals)
• Specific Carbohydrate diet (removes specific carbohydrates including all grains, lactose and sucrose)
• Yeast-free Diet (eliminates yeast and sugar)

 
The Gluten-free diet has been studied the most for individuals with Autism. However, more research is needed to statistically confirm the benefits. It is believed that the breakdown by-products of gluten and casein (peptides) may interact with opiod receptors in the brain, either causing or significantly increasing autistic behaviors. Studies have also shown that there are increased food antibodies (IgG and anticasein antibodies) in a subset of children with Autism who have co-existing gastrointestinal issues. Although this suggests a "gut-brain" interaction, researchers can't yet confirm the direction of this interaction.
 
Surprisingly, gluten can currently be found in a myriad of products in the U.S. Examples of food products include: bread, cereal, pasta, cake and donuts. But, did you know that gluten can be found in many non-food products as well? Examples include: lipsticks, toothpaste, stickers, detergents and sunscreen. This is definitely something to consider when making the choice to trial a gluten-free diet.

The Feingold Program is also a popular diet for children with a variety of learning and behavioral differences, including Autism and ADHD. In 1965, Dr. Ben Feingold began his studies of the link between certain foods and additives and their effect on some individuals’ behavior and ability to learn. The Feingold Program is a form of elimination diet where foods containing certain harmful additives are removed and replaced with similar foods that are free of those additives. When starting the Program, certain foods and non-food items containing an aspirin-like chemical called salicylate are also eliminated, and later tested for tolerance. 
 
Recommendations
The best recommendation again is to know your child, trial changes consistently for a short time and monitor for any benefits or side effects. It is also best to work with an experienced nutritionist, dietitian, or clinician if possible with experience in Autism.

References

• Autism Research Institute (ARI)
• The Complete Guide to Asperger’s Syndrome by Tony Attwood (2015)
• Dana Laake, Registered Dietician and Nutritionist, www.danalaake.com
• The Interactive Autism Network
• TACA (Talking About Curing Autism)-tacanow.org
• Spectrum-spectrumnews.org
• The Feingold Diet-feingold.org