None of my two children have autism. So why — you might be wondering — am I writing about this? The answer is simple. My first child suffered serious anoxia at his birth in 2014 and therefore my life has been quite unique since then. At the beginning of this special journey, I felt different from all other mothers. Fortunately, I met some women whose children had been diagnosed with autism. These mothers have played a pivotal role in my life — not only because they have understood me quite well, but also because they have been an inspiration for me. If you have a child with special needs (not necessarily autism), I’m sure you can also draw inspiration from some powerful autism moms.
THE AFTERMATH OF A DIAGNOSIS
Over the past few years, hundreds of parents throughout the world have received some tough and maybe disturbing news from doctors: “your child has autism”. Regardless of the reality of each family, the truth is that receiving a diagnosis about your kid is never easy. Parents might feel various types of emotions — from fear to sadness — and think that therapists and doctors will now play a central role in their child’s life.
This is true, indeed. Therapists and doctors actually should play an important role in your child’s development. Their work and knowledge can help improve your child’s quality of life. This doesn’t mean, however, that you are left with a walk-on-part in this story. Quite the reverse. When it comes to caring for a child with special needs, family also has the lead role.
This may seem obvious, but when we are going through ‘the aftermath of a diagnosis’ (that is, when we have just been told that our child has some special need), we may experience all sorts of intimidating and discouraging feelings. We feel vulnerable and impotent. We think we are too weak to face this challenge. We almost (almost!) forget we can have a surprisingly great ability to get over problems.
Have you gone through this? If so, please remember: when it comes to caring for a child with special needs, family also has the lead role.
FAMILY AS A PROTAGONIST
I have been daily taking my eldest son to rehabilitation clinics since he was two months old. Over the past years, I have witnessed the positive impact of a well-balanced partnership between family and professionals (doctors, therapists, teachers) in the lives of many special children.
Family and professionals, together, form a strong basis for a child’s development, and this team work is even more important for children with disabilities. If the child lacks one of these two supports, his or her medical prognosis might get negatively affected — hence the importance of parents’ being aware of the huge power they have in their hands.
For a child with special needs, life has to be more than just therapies and treatments. For his or her integration in society, it takes more than school inclusion. His/her family’s attitude towards disability can have a huge impact, not only on the individual development of each child (which is a topic for another post), but also on History and on the daily routine of clinics. Having said that, mothers of children with autism have left an important and inspiring legacy.
A MOTHER’S LEGACY IN THE HISTORY OF AUTISM
In the 1960s, after almost twenty years of mothers being wrongly accused of causing autism in their children, parents and activists started to fight more expressively to raise awareness about autism. It is noteworthy to mention that a MOTHER of seven, Ruth Sullivan, has been one of the most vocal activists. Her work has deeply impacted the history of autism in the 20th century, according to journalists John Donvan and Caren Zucker in their book “In a Different Key,” released in 2016.
Tired of being told that her alleged lack of affection caused autism in her son Joe, Sullivan confronted the specialists. How could that be? How could she raise seven children in the same loving environment and only have one be affected?
MORE AWARENESS AND MORE RIGHTS
Ruth Sullivan’s tireless work since the 1960s has undoubtedly contributed to the increasing awareness about autism we see today. One of the results is the fact that today we celebrate April 2 as the World Autism Awareness Day.
She has also helped to found the National Society for Autistic Children, has written letters to the press and to lawmakers and has worked with teachers so that children with autism could be properly cared for in classrooms.
According to Donvan and Zucker, her fight also has had an impact on how the cases of autism were addressed by doctors and psychologists. After a few years, Sullivan worked with psychologist Bernard Rimland, who confirmed that there was no scientific data or evidence to the idea that autism stemmed from bad parenting.
AN EXAMPLE FROM BRAZIL
There are also more recent examples of mothers whose fight has impacted other families’ lives. In 2009, Berenice Piana, a Brazilian mother of three children — the youngest has autism — mobilized parents, lawmakers and other members of society to pass a federal law ensuring rights for people with autism.
WHAT DOES IT HAVE TO DO WITH YOU?
These facts and examples might have a lot to do with you. They show the huge impact special children’s families can have.
If you are now living the (difficult) aftermath of a diagnosis, remember you are not the only one going through this and that you are stronger than you think. This is why knowing other families can be so refreshing and helpful, as they might inspire you and give you information about parents’ associations. I am sure you’ll gradually feel more confident and be able to acknowledge that special motherhood is, actually, a blessing in disguise.
Books about autism:
In a Different Key — John Donvan e Caren Zucker (In English)
O lado engraçado do autismo – Rodrigo Tramonte (In Portuguese)