Why awareness?
If I could "cure" autism, I would not. Please don't misunderstand. If there are things we are doing with the chemicals in our food and environment leading to autism, I want people to be educated and not do things to increase the chance their child will face potentially debilitating challenges. And yes, I would love to save some of the heartache, financial woes, etc. challenging families and marriages. BUT those challenges have shaped us, made us more grateful, and introduced us to amazing people we would never have known without autism. I don’t want to “cure” Deane’s autism. I don’t want to change who he is, but we do want to grow the abilities and opportunities for our son and others with similar challenges.
I've known my sweet boy for six and a half years. For the last four, I have known he has autism. Time has softened my perspective. I no longer focus on what looked like autism happening to my child as I watched the light leaving his eyes. I now think of autism as part of who he is. He is uniquely Deane and he is fantastic.
As we mark another Autism Awareness Month, I asked myself what exactly do we want to come of raising awareness. We all rally around causes because we want cures or research funding or supports, etc. So, what exactly do I believe would come of autism awareness?
- For families of a young child with autism who are trying understand their situation (therapies, insurance, family roles and dynamics), I hope for support.
- For kiddos struggling to keep up in school (whether socially, academically or other), I hope for resources - trained people, time and funding needed.
- For pre-teens and teens dealing with the potential setbacks of puberty and the challenges of daily living in the social world of junior high and high school, I hope for understanding and patience.
- For those transitioning to adulthood, I hope for more employers to see the unique value of adults with autism.
- For adults who have been forgotten or dismissed, I hope for love and care.
I think understanding and awareness are the first steps to making these things happen. Who doesnt want to be understood? Believing we have a responsibility to help is a big part of the solution.
Here are some practical ways to raise awareness and support those trying to give children and adults with autism many abilities.
EDUCATE YOURSELF
This can be challenging since autism comprises such a broad spectrum. Here are a few articles you could read or videos to watch this month to better understand individuals with autism and those caring for them:
Ten Things Every Child with Autism Wishes You Knew
TED Talk: Temple Grandin - The World Needs All Kinds of Minds
Autism Meet Adolescence…Kaboom!
Ten Things I Wish Someone Told Me About Parenting a Child with Special Needs
25 Random Things About Motherhood Autism Style
A Day in the Life of an Autism Parent
Calming a Meltdown - I share this 5 minute video because this is very similar to our experience for a few years. It brings tears to my eyes, but this is not what the child or the parent wants. This is two people trying to cope. It is exhausting, all of the emotions are pouring out of both. I experienced this followed immediately by a calm child hugging me and eventually saying thank you.
11 Things Never to Say to a Parent of a Child with Autism
Autistic Boy Explains Autism - a touching account of a 19 year old boy
The Obsessive Joy of Autism
SHARE INFORMATION & ADVOCATE
Share some of your favorite articles or videos with others on social media or in conversation. Don't allow adults or children to treat or even talk about people who are different in a derogatory way.
Here are a couple links about teaching children about autism:
Children’s books about autism
Teaching Children about Autism
DONATE
Consider the specific mission of nonprofits.
There are organizations who focus on improving the lives of individuals with autism and include those individuals in their organizational governing such as the Autism Society of America or Autism Self Advocacy Network.
Consider organizations that benefit your friends and neighbors who have autism. My two local favorites:
Children’s Therapy Center (Moline, IL) - Deane has been receiving OT services from CTC for four years. CTC works to make services available to all families regardless of their financial abilities. Our OT, Christy Hansen, has navigated the maturity process from 2.5-6.5 and covered almost every area of which you can think. They have an impressive history of service to our local community.
Quad Cities Autism Center (Moline, IL) - Deane has attended here since June 2011. His teachers here and the advising staff have literally taught him to communicate, have taught him the joy of learning, and have shown him endless patience and care. We have no idea where we would be without this opportunity and the extremely high standards of the director, Michelle Smyth.
Thanks for taking the time to consider what you can do this month to be an autism advocate!
I tried to explain what autism looked like describing Deane’s “symptoms” in 2011 and another update two years ago. I used terms in a way I would not now. Re-reading that post opened my eyes to our evolution in the last four years. There has certainly been a progression from ownership as a family of all-things-autism in our life to recognition that it is Deane, an individual, who has autism. We are simply his family trying to figure out how to support and work together considering some unique parameters.
To continue to document his progress, I will attempt an overview of how the symptoms of autism have evolved within Deane or how they impact Deane in the world.
Speech -
Since the loss of communication and lack of phrases is what led us to originally seek a diagnosis, I cannot fully express how far we have come. Although Deane does not have extensive conversations, he will continue to speak with us for several questions and answers. He sometimes gets very excited about a preferred topic and will share everything of which he can think. This is not a disassociated list, but he is very much sharing his enthusiasm assuming the listener will feel the same. He is no longer echoic. He sings at random, which is an amusing mixture of praise music and whatever latest pop or hip hop song his dad has played for him. His spontaneous language is rich with a variety of words and ideas. For whatever reason, Deane experiences periods of time (usually a few days to few weeks) where his communication will come more fully alive. It seems to occur around a vacation. He shares many more of his feelings and the thoughts that we can see being formed the rest of the time. These are my favorite days.
Sensory -
Through Occupational Therapy and maturity, Deane has overcome many of the tactile (touch) aversions he had when smaller. He manages sound very well. You may see him cover his ears at times, but this is rarely to avoid a loud noise. He uses this method to block out sound because it is one sense he can control when he is overwhelmed. I find this happens primarily when he is encountering something too emotional - a scene in a movie, a crying sibling. Temple Grandin’s book, The Autistic Brain, gave words to Deane’s sensory behaviors better than any other collection of information. It is common to want to understand whether a child over or under reacts to sensory input. Temple discusses Carly Fleischman (a non-verbal woman with autism and co-author of Carly’s Voice) and how in a scenario of sensory over-stimulation, she is equally likely to shut down as she is to have a tantrum. This has been Deane, but I am seeing his ability to communicate through these scenarios improve regularly. He still avoids sloppy foods. His diet is still pretty narrow. He often walks with his body pressed against us looking for input. He can appear hyper-active as he pursues enough input to regulate himself. The theme of our sensory journey has been that as his ability to communicate increases, so does the ability to tolerate or modify the sensory experience.
Social/Emotional -
This is another area where ability to communicate and understanding is paramount. I would consider this my primary focus for Deane at this time. As a parent, it feels like this is an area with few research based tools available and few people with significant training. Managing the unique social and emotional needs of each child with special needs makes this work too large for schools and therapists and too daunting for parents. This is not untrue of all developing children, but most do not need all social scenarios explained, hand over hand instruction, prompting during interactions, or someone recognizing needs for breaks, etc. Over time, Deane has developed better understanding of the boundaries with his siblings. He is motivated to “teach” his little brother, Reed, new things. He is a warm and loving boy. Although he doesnt always participate, he is beginning to see the value, in sharing or taking turns with items, ideas and being in control. Hopefully a day will come when he sees how lucky he is to have a sister like Kate to constantly want him to play with her. And of course she is so lucky to have a big brother like Deane.
Deane continues to attend ABA therapy 18 hours each week. He has a weekly speech session that is shared with 1 or more peers working on social speech skills. He continues OT every week or bi-monthly depending on the time of year. He attends kindergarten for two full days each week. He spends his free time researching his greatest interests - Skylanders and dinosaurs. He uses his own laptop and printer to make books, posters, puppets and checklists of his interests. He loves to spend as much time as possible in his pajamas. His favorite foods are ice cream, french fries, peanut butter and various fruits. He reads above grade level. His favorite books (which we are reading together) are the Magic Tree House series.
This most certainly does not cover it all. Deane is a complex, fascinating, very smart, sweet, and awesome boy. I can’t wait to see our shared journey of facing autism continue to morph into how he independently overcomes challenges to reveal his strengths to the world.
So much has happened in four years for which we will be forever grateful.
