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Autism Self-Advocacy is for Everyone on the Spectrum

Yes i  can
By Michele Iallonardi

My son Jackson is 14 years old. In his 14 years, he has learned very basic communication. I want (rice) milk. I want chicken. Push me (on swing or stroller). He can use a device to say these things, but he can speak them too.  Those who know him well can usually understand. When he can’t be understood, the device helps.

Besides having autism, Jackson is medically complicated. He has had multiple surgeries, hospital stays, and medical issues. Jackson has a seizure disorder, colitis, chronic allergies, chiari malformation, low growth hormone, kidney surgery, a weakened immune system, and more. He is no stranger to medical professionals. Because he cannot effectively communicate, it is always a guessing game trying to figure out what is wrong. Usually a fever or behavior outbursts are the tip off. By the time we know what it is, it is usually pretty bad. Not knowing what is wrong with Jackson, if/when/where he is hurting, is one of the most difficult aspects of his autism. The heartbreak that comes along with knowing that my son is suffering and cannot tell me-- it can be unbearable. I am his mother,  my job is to take care of him. When I don’t know what to do I feel like I have failed him.

We have tried for many years to teach him how to articulate pain. His speech therapists, his special education teachers, my husband and I-- we have all tried countless ways to teach him to alert us when something is wrong, with little progress. It is so hard for him, as is for many individuals with autism, to express something that can be so abstract.

Yesterday, Jackson was in a great mood.  Happy, laughing, all I could ask for. When Jackson is happy, everyone is happy! It is January, and the New York weather makes it difficult to keep him occupied. He doesn’t like to be out in the cold, and so weekends are hard.  I asked him if he’d like to go for a ride in my car, just to get out for a little. He got his sneakers, and then he replied with something I wasn’t sure I understood.  I handed him my phone so that he could type it for me.  This is what he wrote:

Jax





Huh? What does that mean?  It didn’t make sense. Jackson was fine, no signs of sickness. He was in a great mood, eating, drinking, playing, all good. He must mean something else. I asked him again what he wants, same reply. His aide and I shared a confused glance, and she went to get his device. It has icons and categories and can make it easier for him to express himself. She gives him the device, and he automatically goes to the keyboard. He writes this:

JAX2

I am so confused. I’m probing him with questions. What will the doctor check? Does something hurt? Jackson, what do you want?  The answer remains the same. I. Want. Doctor.

Okay…….  so I guess I’m going to the doctor.  Of course it is the weekend, and off hours, so we can’t head to our regular pediatrician. But there is a nice pediatric walk in nearby, where Jackson went a few months ago for an ear infection.  I feel silly going in with Jackson who seems perfectly well, but I go.  I want to respect his request.

We get there, and they ask what is wrong. I explain that he is mostly non-verbal, but has requested the doctor on his device. I don’t think anything is wrong, but would like them to just check his ears for me. While we are waiting, he uses the bathroom. He comes out of the bathroom happy and jumping around. I think maybe he had a stomachache and that is why he asked, but still we wait to see the doctor. He’s eating his snack in the waiting room as we wait. The doctor remembers him from last time, and makes sure she talks directly to him, which makes me happy. She checks his ears and talks away.  No infection, no fluid. Ears look good except for a little wax stuck in one, which she clears out. That must have been it.

She looks in his throat quickly and says it is a little red, let’s do a culture just in case. I don’t think it is necessary, but I’m happy she is being thorough. It takes a few attempts, but they do the culture and we wait. Me and my happy boy.

The doctor comes back a few minutes later and tells me that the culture is positive.  Jackson has strep. Strep!!!

I am shocked. My eyes are filling with tears. Jackson knew that his throat hurt and that he needed to go to the doctor. He was able to TELL ME to take him to the doctor! I would have never ever known that he wasn’t feeling well that day. Nothing was different, nothing. Normally, that strep would have been there for days until it was a raging infection, until he had a fever, until he couldn’t eat, until he was miserable. Then I would have figured out that he needed a doctor, not knowing he had been in pain for days. But today, at 14 years old, my son told me for the first time ever, completely on his own, that he was sick. That something was wrong and he needed to go to the doctor. He had strep throat and he figured out a way to tell me.

For Jackson, this is life changing. Although he couldn’t articulate to me what was wrong, he knew that the doctor could help him. He felt pain, and he used his words to tell me what he needed. He advocated for himself.  I am so proud. My heart is so full it feels like it is swelling out of my chest.

This is huge for Jackson, and gives me so much hope for his future.

Does this kid look sick to you?

  Jax3

I never would have known.  But he did!!

Always have hope, my friends.  Always.

Michele Iallonardi is mom to three incredible boys, Jackson, Bennett, & Luca. She is on the Board of Directors for the Nassau/Suffolk Chapter of the Autism Society of America, and is the Publisher of Hauppauge-Smithtown Macaroni Kid. Michele has a Master's Degree in Early Childhood Special Education. She lives on Long Island with her husband Ralph & their boys, and enjoys serving the autism community, busy days, and dancing in the kitchen. She can be reached at Lumardi@verizon.net

Comments

 to Charlotte Lenseigne

Charlotte;
He is already in special ed and I bet he is already tested and labeled.

You just don't now the language of the DSM books that the schools use to label them.

If he is in special ed - they have diagnosed something, else he would not be in special ed.

Ask your children about those papers; what do they list?

Communication disorders? Developmental Delayed NOS that is autism by the way.

Shibi Baby

Thank you for sharing your wonderful experience which really makes us happy as it is a sign of Jackson's progress.

Kayla Wildman

What a wonderful story! Thank you for sharing it!

Charlotte Lenseigne

We have a grandson age 121/2 who we wish to have tested for ASD he we believe is mild compared to others we have known of , his parents are in denial and we would like to know how we can get him tested . He is in special Ed in a regular school but has really been struggling with most of his classes. Has shows signs since little like lining up cars,wanting all his Legos separated by colors, having meltdowns when corrected as well as seizures, where can we get him properly diagnosed and tested.

Sue L.

Wonderful anecdote. Kudos to you for working so hard to understand your son as he works so hard to be understood!

Hera

What a beautiful heartwarming event. Those small steps make such a huge difference. The ability to communicate so that people know what is wrong is life changing. Love to Jackson and all your family.

Eileen Dunn-Narman

This is absolutely wonderful! I strongly feel children with limited language should have communication devices and be taught how to type. I am honored to say I know Michelle. She is a truly devoted mother and very hard working lady. My son has autism and was non-verbal till 6 years old. He still struggles with use of language but he is making progress. I can truly appreciate the magnitude of a child asking for help for the first time. I hope Jackson will continue to use his words to communicate. Nothing is more touching to a parent than knowing what their child is thinking. Kudos to Jackson and Michelle!

Sun~Rose

Echoing all the wonderfuls!

And lots of us on Long Island.

And with love uggesting again www.IAHP.org Such a miracle for us 40 years ago.

Paula

Michele thats so amazing. What a huge milestone for you all xoxo you are an amazing person xo

 Teresa Conrick

What a great event for your family and Jackson! We are not there yet with Megan but I still have good hope. The fact that he had Strep of course, leads me back to how our kids have such poor immune systems and harbor so many pathogens and not enough good guys.

Such an inspiring story. Thanks for sharing!

best,

Teresa

Christine

A testament to your devotion to your family! So happy for all if you.

The Kelly's

That is such a beautiful story, and gives me great hope that one day I may share the same story. As your story has show we must never give up hope, our children can do the unthinkable when we least expect it. 😌

Rosemarie

have you researched PANDA ? I think its an illness caused by strep. Bless you and your family.....I feel your struggle and your love for your children. Take care from another mom with a special child

Dawn DiMarco

I love this story...my eyes filled too!
Functional communication!

Lori O

An incredibly hopeful story to read, thank you! I pray for this very type of self advocacy for my son. He's 11 and just learning to type for this very reason.

Liz P

Well done, Jackson - a giant leap toward self advocacy and actual ideation!!! Time for a party for all involved!

Susan Palermo

Thank you for sharing your story! So happy to hear Jackson is expressing his needs to you! You are a super strong Momma!! You inspire many!! ❤️❤️

Twyla

Wonderful!!

The God of Small Things

This is a wonderful story with a happy ending but it also illustrates the woeful predicament of so many autistic people and their families - most often this will be a story where nothing neat happens in the end and the child won't even open their mouth, or trust anyone to look inside - won't in fact be able to tell anyone there is anything wrong. A world away from Steve Silverman, John Donvon, Kimerley Rutan McCafferty and the merchants of autism flannel (to call it something polite).

Sara

amazing triumph!

Trish

Such a great story & milestone reached! So happy for all of you!

Jami Ashendorf

Michele, I am so happy for you and Jackson. Amazing growth from when we met at the age of 5. You and Ralph must be so proud! I loved reading this. Thanks for sharing.

Amy

Wow so wonderful and what a smart kid! Michele, have you looked into RPM (Rapid Prompting Method) with him? I bet he would do great. Read Soma's books. So many kids are really doing well with RPM.

Jill

Yayyyyy Jackson! I am so happy for you both!

Grace Green

Well done, Jackson, Michele and your doctor! As someone with a BA degree I can tell you that even I often have great difficulty knowing where the pain is coming from. I have to think very hard and try a few things out. Unfortunately I have a doctor who just keeps repeating "what do you want me to do?" and never does any tests! Dr. Wakefield has said, "When in doubt examine the patient." The other side of communication from ASD people self-advocating is people who are willing to spend time trying to understand.

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