4 Things To Remember When You Choose Not To Disclose Your Child’s Autism Diagnosis

“My 2.5 year old nephew’s class teacher informed my sister in law he might have autism. She is devastated and is desperate for a diagnosis for the child. Can you recommend somebody trustworthy?” Said my friend.

 

“Yes, I’ll recommend somebody. But can your sister in law meet me?
I’ll explain that autism is a gift, not a diagnosis to be shied away from.”

 

Thank fully, I only ‘thought’ this thought and didn’t voice it.
I would have kicked myself, had I said it.
Today, after 25 years I can say autism is a gift. But how did I feel when Mohit was being diagnosed?

 

I wanted it to be a false alarm. I hated the word ‘autism’ and wished it did not exist.
And yes, for many years, I didn’t share the diagnosis with anybody except my immediate family.

 

A couple of deep conversations this past week, recreated the familiar, discomforting feeling.

 

Conversation 1

 

I met with 2 members from the same family. Both have kids on the Spectrum. One disclosed her son is autistic. The other didn’t.

 

The one who didn’t disclose it, felt it was a wise decision.
Her argument? The label of autism carries a stigma which acts as a deterrent to development. Opportunities get limited once people realize a child is autistic.

 

Schools and teachers are averse to admitting students on the autism spectrum. Expectations drop to zero levels. Many educators feel the child is incapable and hence don’t challenge the child to learn further.

 

In case of disclosure, each and every behavior of the child is met with, “Oh, he’s autistic, that’s why he behaves the way he does.”
With non disclosure, the response to the same behavior is, “Oh, he’s just having a rough day. Just one of those days.”

 

“Why would I disclose my child has autism, if he’s going to be treated differently? Imagine what that would do to him. “ Said the mother.

 

I got it. I nodded in understanding.

 

Conversation 2

 

The next day I met a mother of a 16 year old on the Spectrum.

 

She hadn’t disclosed her child’s diagnosis at all. Not to her school, not to relatives.

 

She voiced issues the young girl was experiencing, viz. anxiety, depression, not wanting to go to school.

 

Again, the mother felt a diagnosis would have limited her daughter. She would not have got the chances she did, had she shared the diagnosis.

 

I pointed out her teenager needed help with the anxiety and depression issues, which could be an offshoot of the autism.
Disclosing the diagnosis would open up treatment doors for her.

 

After all, autism isn’t a death sentence or a bad thing.

 

“That’s what you think, Kamini. But what about the wagging tongues out there.”

 

“And it will ruin the chances of marriage. Who will marry somebody with an autism label?”

 

I tried to understand.

 

But I had to stop my mind from running into thoughts about a beautiful autistic woman being married off to somebody who had no clue about her autism. That would be a sure shot recipe for disaster.

 

Dear Parent, do you accept your child just as s/he is?
You don’t have to answer immediately.
But think about it.
Do you equate ‘different’ with ‘less’?

 

It starts with acceptance in your mind first. It starts with acceptance in your home.

 

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Once you sort that issue, think about the following points.

 

1. Disclosing opens up the way for services

 

Research shows that autism is often accompanied by other co morbidities, such as anxiety and depression, especially as the child grows older.
Your child is entitled to the best services available.

 

Unless the core deficits of autism are addressed, how will your child have a good quality life?

 

Keeping a diagnosis under wraps, will come in the way of receiving full fledged services.

 

I had a conversation with an oncologist a few years ago. She stated they always encouraged their patients to disclose their cancer diagnosis. It’s important for getting the right help and support.

 

Why should it be different for autism?

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2. Social Stigma

 

You worry about how the world will perceive your child, isn’t it?
Remember one thing, most of what we worry about doesn’t come to pass.

 

I interact with people of all ages. The other day, I found myself explaining autism to a grand mother.
She had a niece with Down’s Syndrome. She equated autism with Down’s and Intellectual Disability.
So I spent a few minutes talking about what exactly autism was. At the end of it she was grateful for the clarification.

 

Remember, people may want to understand, they just don’t know how to voice it.

 

Many from Gen Next get it.
When my young friends come over, I find them sitting with Mohit, trying to strike a conversation with him. They’re open and accepting.
Hopefully the stigma that was deep rooted in the old days is less prevalent these days.

 

Yes, we have a long way to go, but things are slowly and surely getting better.
Do your bit to reduce social stigma. Have conversations with people- one at a time.

 

3. Autism doesn’t ‘go away.’

 

I had this misconception when Mohit was diagnosed. This was 25 years ago.
We lived in South Korea at that time. For several years I did not disclose his diagnosis. I was confident he would outgrow it.
I thought I’d work my head off, get language and skills in place and Mohit would become indistinguishable from his peers.

 

I was so wrong and naïve. Autism doesn’t go away.
It’s a way of being.

 

Your child, and mine, is autistic and will be autistic.
That’s the way his brain is wired.
We have to respect this beautiful person in front of us.

 

It’s about you and your child.
It’s not about your child and the rest of the world.

 

4. Disclosure will spell relief for your child

 

Many people on the spectrum talk about how they always felt different and the autism diagnosis actually made them feel relieved.

 

I met a family a year ago. The young man was around 25.
He just couldn’t hold down a job.
When he was diagnosed, he and his parents were relieved.
The parents were relieved he wasn’t deliberately messing up
He was relieved as finally there was a name to describe what he had felt his entire life.

 

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If you think your child will react adversely, think again.

 

We want society to change, to accept our children.
But change begins with us.

 

We want schools to be more accepting.
But we have to be forthright and expect respectful treatment for our children.

 

Autism is a neurodiversity.
It’s our responsibility to educate the world.

 

9 COMMENTS

  • Dr. Renuka Nambiar says:

    Great article, Kamini. Thank you for sharing. I disclosed his diagnosis to everyone, the day he was officially diagnosed. I remember, when Sanjeev was little and we were all at the airport waiting for a delayed flight. Sanjeev must have been about 7 yrs old then. He was frustrated with the wait, and started acting up. Everyone turned and looked at hubby and I, as if we were the culprits in bringing up such an unruly and badly behaved child. Everyone stared with different expressions on their faces: Disgust, irritation, condescending looks, superior-than-thou looks. I always carried with me something for these very situations! I got up, opened my bag, took out brochures about autism I had prepared, and distributed to all people who were staring. While they read my brochure, I went on to calm my child. Label or not, I strongly believe we ought to educate the society about autism. Our autistic kids are just different, never any less! If we don’t fight for our children and their labels, who else will? If we hide our autistic children, how can we become their advocates?

    • Thank you for sharing the airport experience, Renuka.

      What an innovative way to spread awareness.

      I know you continue to work hard to spread awareness.

      Keep inspiring us!

  • Very well said, Kamini and Renuka.
    Whether we admit it or not, it is parents who will spread the awareness of autism, not teachers or doctors. Primarily because parents have the most knowledge. And we, as educators, or doctors, or just people, need as much education as we can get. Not only for awareness, or tolerance, but for humaneness.
    As an educator who works with parents all the time, I hear parents who feel so isolated, because they feel they can’t or don’t want to disclose this information. As you explained with your example of cancer, the minute you share, the likelihood of finding someone who can offer some support is much greater. There are other children and therefore other parents who can support you, and they need you as much as you might need them.
    And then, parents, schools need you to help them understand how to support your child and other children like them.
    And humankind needs you to help them be more human.

  • Shishir Kant Misra says:

    We all in the family wear Autism of our granddaughter on our sleeve. Every person we meet for the first time we tell Roshnee has Autism. But this is not enough. We take Roshnee to park every morning where one of her activity is to use the swing once. When she approaches the swings and all of them are occupied she will go so close that the person occupying the swing stops suddenly, looks awkwardly and vacates the swing. It is then that I approach and tell about her Autism. I am doing that I park, movies, malls, restaurants or wherever we go. I am making people around aware about Autism so that when Roshnee grows up she would be moving in places where people will know about Autism. In a recent International Conference on Autism in Bangalore Roshneecread a paper which had opening lines “I have Autism. I don’t know what it means. I cannot talk like you. I cannot read books like you. I do sight reading as I am doing now. She went on reading her paper for 7 minutes.

    • How wonderful to hear about Roshnee’s resilient spirit, Shishir ji.

      You are an inspirational grand parent. It’s always lovely to hear from you.

      Thank you for sharing.

  • lekshmi avinash says:

    Good article mam…my son is in the spectrum…for me the realisation took many months to accept that my son having ASD… But when I see him he is sooo happy in his own world..and the world he is seeing through his eyes is the most beautiful world… Now I’m also trying to see..trying to feel….all the things. I’ll think we all want our kids our life should be different from others. Maybe cz of that god has given such a valuable gift. This article mam is such an inspiration. I feel I’m so lucky that god had chosen me as his mother and gave him…. He is my teacher, inspiration I’m also learning from him how to be happy, to be content, to be stubborn. Thanku

  • How nice to hear from you, Lekshmi.

    Truly, there is so much to learn from individuals on the spectrum.

    Glad this article inspired you. Thank you.

  • […] We, as a society have bought into the negative beliefs surrounding autism. The minute we hear the word, ‘autism’, we give up on the individual. Stigma surrounds the diagnosis, leading many families to hide the diagnosis. […]

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