In no other community is the month of April met with less enthusiasm than it is among parents of children with autism.
It may surprise you to know that every year, they wish for nothing more than a quick close to “Autism Awareness Month,” eagerly anticipating an 11-month reprieve from lighting all the things up blue.
Why do so many autism parents dread April?
Quite simply, because they believe that their children’s pain and struggles are marginalized by the celebratory tone and the “nothing is wrong with having autism” sentiments.
In most cases, their children’s medical conditions – that culminated in an autism diagnosis – have taken their toll in insidious ways on their families. These families believe medical healing should be the focus.
To accurately represent the real-life families struggling with an autism diagnosis, we asked the 44,000 parents in the Recovering Kids Facebook Group their thoughts on World Autism Awareness Day / Month. Their poignant quotes are throughout this article.
“People don’t celebrate breast cancer. They walk for it. They share stories of recovery, hope for healing. The money raised is for a cure…
With autism, the bag is mixed. People walk for it. But the pledge is for acceptance. No one tells someone to accept their breast cancer.”
“We love our children, that’s a given. But we don’t love their autism or consider it a gift any more than your mother loves her breast cancer or your grandfather his Alzheimer’s disease.”
“Our children have medical needs that must be addressed. They have immune dysfunction, mitochondrial disorders and more, and we’ve witnessed time and time again that effectively treating them diminishes their ‘autism’ symptoms.”
“By it’s very name, Autism Spectrum Disorder is a disorder. It’s not a hair color. Autism is not something that’s an innate part of someone that should be celebrated like Kiss-a-Ginger Day.”
The parents experiences are echoed by many studies, including one that recently found, “Over 95% of nearly 2,000 autistic children had at least one additional major medical issue. On average, each child had 4.9 secondary conditions in addition to the core deficits of ‘autism’.” [R]
Autism, it seems, for many children, is not even a proper diagnosis. It’s a catch-all term for a group of medical conditions that are causing them to present with neurological and physical symptoms.
People would never celebrate Parkinson’s disease, yet from the blue light parades, balloons and acceptance hoopla, autism awareness day and month have taken on a tremendously insensitive tone.
“It’s not the blue lights that are the problem, it’s the message of acceptance behind them…
If they were instead symbolic of, “We are so sorry your children have such challenging medical conditions and we stand with you, supporting your treatment of them.”
Then we truly would be celebrating!”
“Achieving social acceptance of children and adults with autism is a positive goal, but accepting that autism is a gift and we don’t need to find treatments, is not helpful to our children.”
Many parents also implore their friends and family to NOT donate to Autism Speaks, the organization most responsible for promoting the inappropriate tone. It’s troubling to them that money raised is slated only to provide sustained existence and research genetic causes. [R]
“They are not helping to:
- treat our children’s medical conditions,
- bring any real improvement to their lives, or
- prevent any of the many environmental causes”
In fact, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.” – from Forbes’ Why Autism Speaks doesn’t speak for me
This topic is further explored in, Let’s Start Honoring People with Autism by Stopping the Celebration of Autism
What do autism parents celebrate?
“That our kids are some of the strongest, bravest souls you will ever meet. They inspire us daily! The challenges many of them endure because of their medical conditions – much like cancer patients – can be heartbreaking. Gut wrenching.”
World Autism Awareness Day
To help April 2nd and the entire Autism Awareness month remain centered on true awareness of the reality of Autism Spectrum Disorder, the autism parents were also asked to complete the statement:
“Our autism family would like the world to be aware…”
“Autism” is a medical condition and should be treated with the same dignity and grave concern as all other serious medical conditions.
A majority of children with an ASD diagnosis have mitochondrial dysfunction that can contribute to most of the hallmark behavior and health signs of ASD. Once treated they can make gains! Have your child tested!
Please don’t pass judgement or look down on kids with asd.. they are special and uniquely designed. Love and help make them more independent.
Autism is medical. And once the underlying causes are addressed and treated many children can go on to lose many of the symptoms that we refer to as “autism.” Some children may recover.
Even if your child can’t speak or otherwise communicate, they are VERY MUCH in there. In many cases once children either regain their speech, or find other means of communicating, we find that all along they were feeling, thinking, processing: they are with us, but trapped.
Sadly, ASD may very well be coming to a family near you, because society is not prepared to confront the root causes. The causes of autism need to be a concern to everyone.
Autism is not a mental illness. And it is treatable!
The autism we know today is being caused by the environment. Biomedical interventions can treat and heal many autism symptoms.
All children are capable of growing, learning and maximizing health.
Autism families need support, acceptance and understanding. We are some of the strongest people you will ever meet!
Many children with autism have abnormal EEGs and also have epilepsy. Treatment for seizures (even subclinical seizure activity) can drastically improve the lives of these children.
“Autism” rates are now 1 in 41 children… it’s more than an epidemic!
They don’t include treatable medical causes of autism in medical school. But, that doesn’t make them not exist. They are real. And, if early intervention is important, please don’t make families spend years finding the right physician or sacrifice every dollar they have to heal their children.
You are your child’s biggest advocate in a society that would have you believe autism is something to celebrate. Autism is treatable, and it up to us as parents to help them heal.
“If you’d like to donate, please choose a local autism organization or one of the charities that is actually helping our kids heal, not Autism Speaks.”
The list of “symptoms” from constipation to insomnia to anxiety, that the pediatrician said were common in ASD were actually our biggest clue that our child was very sick. We started to medically treat those symptoms, and that’s when we met our REAL child who was trapped inside his body for years!
If you’ve met one child with autism, you’ve met onc child with autism… Our children are unique individuals and one size fits all approaches do not work. It takes some time, trial and error sometimes, and open mindedness, but don’t give up on our children or treat them like they are just a number.
Our kids have great potential, and there is no limit to what they can do or learn, even if they don’t fully recover.
When our kids have a meltdown or a behaviour issues, it’s because they are in physical pain or have sensory overload. Please be sympathetic and understanding.
There are many, many co-occurring medical conditions that exist often for those living with autism such as seizures, mitochondrial dysfunction, digestive disorders (leaky gut), allergies, autoimmune disorders, etc.
Often individuals with autism don’t obtain access to appropriate medical care and often behavioral challenges are communicating pain or distress, especially for anyone unable to speak.
That YOU must be the advocate and willing to fight. Unfortunately most pediatricians do not know much about healing your child. You really must do your own research, but the results are so worthwhile, you won’t ever regret it!
There is HOPE in healing and reversing autism if you don’t give up — be a relentless parent and researcher to save your child!
Recovery is possible. But it takes time and energy to research treatments and begin them. It isn’t always easy but is completely worth it when you start to see healing!
Autoimmune issues, PANDAS / PANS, Lyme, other chronic infections and also allergies (food and environmental) are hugely prevalent. Strep and other infections can impact the brain in serious ways. Reactions to GMO’s, artificial colors, preservatives, chemicals… and so many other issues need to be addressed.
Autism is a neurological, immunological and metabolic disorder and deserves to be treated as such.
If we put as much effort into helping kids with autism heal, as we do increasing awareness, it would make such a difference. Our ASD kids suffer daily with anything from painful GI issues, debilitating anxiety and OCD to seizures.
“Please spread the word.. autism is medical and treatable. Please don’t celebrate a disorder, join us in celebrating healing!”
If you, or any family you know, could use support healing a child with autism, please check out the Facebook Group for Parents helping Parents: Recovering Kids
Additional images of featured children can be found on: Our Incredible Kids.
Special thanks to all who contributed comments and photos to this article!
Kelly Steffens
Ashley Thurman
rebecca ferguson
RK Administration
RECOVERING KIDS 