A DIAGNOSIS THAT RELEASES by Bárbara Nhiemetz

“An immense embolus stuck in the back of the throat, countless unspoken words swallowed dry after having spent a lifetime being shut up.” 

So is the pain of trying to be who you are, without actually being accepted. That's how it is when you spend your whole life cloistered within yourself, living and living with the feeling of not belonging. Of not fitting into an edge where everyone forces you to fit.

What does it actually feel like when you don't even understand yourself?

Everything is so abstract and seems to be a tangle of meaningless words, isn't it?! No. In fact, this is the feeling that an undiagnosed autistic person has in front of a whole life inside a great unknown. Who are you and where do you belong in this society?

When the diagnosis arrives, everything makes sense. Feelings begin to be experienced, pains are better understood and words are spoken in all their intensity. Little by little, the weight of incomprehension decreases, the feeling of impotence changes places with the force and, the embolus that before didn't go down the throat, now unrolls the tongue out. The diagnosis arrives and releases and with it comes understanding and the tireless search for inclusion.

What was once felt can now be named. Ahhh!! How good it is to understand yourself and be able to name what you feel.

Receiving an autism diagnosis for the first time makes you able to look inside yourself with more tenderness and less demand. You begin to forgive yourself more. This is the importance of showing everyone the need for early diagnosis and the importance it has for the neurodiverse person to grow by knowing themselves, understanding their functioning and achieving their rightful and speaking place in society.

Including, in addition to being an act of love, is a social obligation. And we need to talk about the relevance of the diagnosis, whether late or early for true inclusion to take place.

A recent survey carried out by the study center of the renowned medical journal Jama Pediatrics points to a new statistic where out of every 30 children and or adolescents 1  is diagnosed with autism in the US. This study was carried out with children and adolescents between 3 and 17 years of age and shows the need to seek an early diagnosis (the same diagnosis can also occur at more advanced ages).

These data present us with a new scenario, where there is a greater ability to recognize ASD characteristics. The previous prevalence, considered one of the most relevant in the world, is 1 in 44 children diagnosed with autism spectrum disorder, released in December 2021.

Such research makes us turn our eyes even more towards our children and ourselves, makes us understand that, contrary to what is said to be a “great eruption of autistic people”, there is a great advance in diagnostic quality, greater qualification of professionals from different areas, as well as more access to information.

We still have a long and arduous way to go until the moment when everyone will have access to quality diagnosis without suffering from speeches of capacitism*, medical negligence and equal conditions. There is a huge gap in the Brazilian support system for people with autism and other disabilities, whether in the area of ​​health or education. 

While we do not transform early diagnosis into a reality accessible to all Brazilian families, we activists continue to fight to disseminate quality information to help as many families as possible, within our reach.

Bárbara Nhiemetz, new PUTABLOG columnist.

Being an autistic mother made me doubly reborn as a person: from a mother who was born with motherhood to the privilege of being reborn as a person, discovering myself autistic late after my son's diagnosis. It was a turbulent path full of doubts, walking through the dark valleys that the solitude of atypical motherhood brings. But it also showed me a large network of virtual support, which kept me firm in my diagnostic search several times. 

Along with atypical motherhood comes immense discoveries.

It closes cycles and introduces us to new paths, which we embrace and use as our inexhaustible source of strength (including on the days when we feel most helpless). The arrival of my autism diagnosis opened new horizons and made me recognize that there are several multiverses of motherhood and living as a disabled woman. When you live a life that is considered typical, it is easy to forget that, from the door out, you are experiencing diversity and that it is on your side and needs to be welcomed. 

There is a great urgency to learn that there are neurodiverse people. This is a constant and, even in the face of an entire system where there is access to information in a clear and direct way, we still face misinformation, disrespect and capacitism in our daily lives.

Thanks to countless people who fight for the cause, we are changing this reality. Our cause is urgent and we need to talk more and more about it, so that no one shuts us up and makes us invisible. Because the autistic person has a voice and their place is wherever they want.

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*Capacitance is discrimination and social prejudice against people with a disability (PCD). In capable societies, the absence of any disability is seen as normal and people with a disability are understood as exceptions; disability is seen as something to be overcome or corrected.

 

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Bárbara Nhiemetz is an atypical autistic mother and artist, tattooing people since 2005. "I change lives through my art and reframe stories. I keep fighting for the inclusion of neurodiverse and disabled people."

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