By guest blog writer – Julia Berle
May 13, 2005 was a joyous day in our household. On this day, seven years ago, our child Baxter no longer qualified for the diagnosis of autism. He had been re-evaluated three years after receiving the label and no longer fit the diagnostic criteria. We were elated. The countless hours of biomedical and traditional interventions were deemed successful. This was exceptionally powerful as we had been warned (with their crystal ball knowledge) that he may never talk or be able to attend school and recovery from autism is, of course, “impossible.”
Just what does it mean to be “recovered”?
There is ample semantic parsing about this word in the autism community and beyond. I started thinking about this and did some quick Google research. In the world of addiction, for example, the word “recover” is also a hot-button topic. Most references generally agree that there is no cure for addiction, but one can recover or be recovered.
What about cancer or diabetes?
Illnesses like these tend to use the terms “in remission” when symptoms are under control and managed. With autism, however, the concept of recovery is more nebulous as the characteristics of the disease itself fall on a spectrum from the mild to the severe. Therefore, must not recovery fall on the same spectrum?
After Baxter’s loss of diagnosis, we lived on “cloud nine” but still continued to carry an umbrella every day should an autism torrent hit our lives again. We never let down our guard as it pertained to his health, well-being, and social/academic growth. A few years ago, we started noticing some behavior changes: he became more easily frustrated, angry, and anxious. His grades began to slide and our home life became more challenging. This grew increasingly worrisome when the family had to pick up and move to a different state. The change in environment and schools was daunting for him and warranted the need to be evaluated yet again. I sat at home in a self-imposed puddle of doom and gloom. I was crazy-terrified that his recovery was merely a lovely dream. Was it all slipping away before my very eyes? Again? Again??
Fortunately that was not the case. Alas, he did receive the diagnosis of ADHD. This was not evident to us as he did not display hyperactive tendencies. We also discovered recently that he has a severe disability with auditory processing. Once we figured this out we were able to make necessary modifications for him, which ultimately helped his behavior and anxiety.
But back to semantics … is this recovery?
Here’s the rub: he still does NOT qualify for the autistic spectrum. But this kid IS vaccine-injured and that bell cannot be un-rung. The “Normal-Kid Fairy” did not fly down and sprinkle him with “perfect” dust. He was whacked by that vaccine club and no amount of intervention could erase that damage completely. Now I believe, understand, and accept that his future health and happiness will require constant maintenance. I often compare Baxter to a classic car. Just as a high-performance vehicle requires premium gasoline, regular oil changes, and tune-ups, Baxter needs proper sleep, food, exercise, love, and ESPN to get through each day smoothly.
This is not unlike the recovered addict or diabetic patient. Addicts do not graduate from a twelve step program. Instead, they must utilize the tools of the program daily to stay sober. Similarly, diabetics do not wake up and no longer need to manage blood-sugar levels. The success of their health requires diligent adherence to the appropriate practices.
These individuals are survivors. Baxter’s recovery also makes him a survivor — a bad-ass autism survivor (cue Destiny’s Child song…)! He faced countless hours of therapies and doctor’s visits. He endured years of gut pain and infections. Yet, in the face of nefarious predictions about his health and abilities he defied the odds and prevailed. He is my breathtaking little autism survivor.
Autism is a spectrum disease, so recovery also falls on a spectrum. To some degree, every child living with autism is a survivor. They get up and fight every day. They try and desire to communicate. They love. They do not want to live in pain, hurt, and isolation. They work harder than virtually anyone I have ever known. Each and every parent of a child with autism knows that every hurdle our kids overcome is a step on the journey of recovery. With the passing of time, I feel more resolute in my promise myself that Baxter was sent to us for a reason. He was injured — a fact that hurts my heart every day I take a breath — and every time I let out that breath I resolve that his experience can and will make a difference. He didn’t become a bad-ass autism survivor for nothing!
More recovery stories can be found on the TACA website: https://www.tacanow.org/category/family-stories/recovered-from-autism/
Thank you so much for posting this , as i sit and read this i am crying for all the pain , heartache and misunderstanding my son has gone through and he has a long road to go to get him healthy . Like you one day our son was okay the next(after shot)he wasn’t the same child , i had to watch him slip from me before i was able to grab hold and fight for him and teach him how to fight back .He is now on the road to recovery with alot of detours but everything will in the end be okay because i won,t let it be any other way . God Bless you and your child and family may he continue to thrive.
I am so moved by your bad-assness! I love what you have to say and am grateful for the reminder, my son is 14 and we go in and out, and i still believe recovery is possible! believing is everything! I love you, from a fellow warrior mom! Keep on with your bad self! You are awesome! Much health and happiness for your son and whole family!
Just LOVE you so much! So glad you are in my life.
Feeling incredibly blessed today. The very very best thing that came out of autism was all you incredible people. <3<3<3
Very well done, Julia, well done. Your perseverance goes beyond, what you have accomplished for your family and Baxter. You are blessed to be an incredible role model to other parents and families with similar struggles. Your faith is endless like your love for being a wonderful wife, for motherhood and for family.
Thank you so much! You wouldn’t believe some of the incredible moms and Dads I’ve had the good fortune of getting to know on this journey. Truly amazing. ❤
Thanks for this helpful post. I’ve cenertly just begun learning about autism spectrum disorders and this gives me a bit of insight into how those around people with ASD often feel.
This beautifully written and heartfelt journey of a Mom who went to every end to help eeher son is not only inspiring, heartbreaking and courageous, it shows us all the Power of Unconditional LOVE. Julia and Baxter’s story of the journey and the labeling of anything, is and will always need conscious examination. She is a role model for others and her son, Baxter, a Super Hero.
Tamara, You and your beautiful boys are part of our journey!!!
hugs to you from afar!
I have been waiting to hear how Baxter was doing for so long!!! Thank you for sharing, Julia. My son Jack also now 6 1/2 will most likely be losing the Dx too, and I am scared as hell~ mostly scared that the school will find out as he need’s (or I need) for him to be protected a little longer. it feel’s like, YEAH ok, all of his struggles are going to educate someone.
He goes for re evaluation in April and Dr. zimmer, at Cincinnati Childrens Behavior and developmental, is very curious to test as she has NEVER “undiagnosed” before. She has assured me that if we test she will be sure to be saavy with wording recommendation’s for the public school he attends to protect him. she will NOT tell them that he no longer meets the criteria.
I will look into auditory processing too~ I want to continue to help Jack fight this horrible shit he has had to endure for years now (4). I know something is STiLL going on inside no matter how beautifully he is doing.
I will email all of you wonderful gals at TACA for an update when results come in. I will never even dare try to take him off the diet.
I thank you girls, 4 years later for helping me find a DAN! and guide me to links of good cookware, etc….Moira and Julia were my mentor’s.
Keep you posted! And thanks again for sharing!
It’s funny you posted Bax watches ESPN daily, ??? Because ,As we speak Jack is watching March madness!!!
Much love and gratitude!!!
Traci, Look forward to the update! Thanks for writing! Enjoy March Madness!!!
Was he normal one day then recieved an immunization and soon had autism??
What a beautiful story! I read this when I saw it posted on Tamara’s wall. My boyfriend’s son is autistic and is next year is going to be mainstreamed in school. It is amazing how much progress he has made in the past 2 and a half years he was non verbal and now we can’t get him to stop talking! Lol its so amazing and warms my heart to hear your story! Here’s to Baxter and Peter!
Its all there and still the pharmas will not own up. too much money on the table.48 states force kids to get HB vaccine at birth, Within hours from birth, It is such a protocol that even us that say, sign off, NO, do not vaccine. May have experienced that midnight nurse, too tired to see the sign off that refuses that vaccine– I wonder? Why have we not, researched and I mean that researched the states that do not vaccinate at birth and from there set up a statistic to gather the numbers in order to finesse how the growth of autism has been impacted by vaccines.
i am really happy for u and i pray that my boy too gets out of his own.
My twins were both diagnosed with a dnoochtimrial disorder around age 2.5 (shortly after being diagnosed with autism) but their markers weren’t consistent with “mitochondrial autism” and they never experienced regression – there were delays from the beginning. I think that goes against the findings of that paper? You did a great job explaining it! Thanks.
Love my Bad Ass parent survivor Julia!!!! Lots of patience, perseverance, advocacy, research
And in general a mama bear not giving up