What Siblings of children with Autism Spectrum Want You to Know

The parents and I are engrossed in watching their video.

 

This handsome teenager gets ready to cut his birthday cake. Suddenly, he gets into an obsessive behavior of asking repetitive questions. And he wants the questions to be answered a certain way! The joy of the cake cutting ceremony is lost. The parents’ agony is clear.

 

My eyes move over to the other young man standing by the side in the frame. He watches the scene between his parents and his brother helplessly. He is a silent and invisible observer in this whole drama. He is the sibling of the child with autism.

 

I feel his anguish. My heart aches for him. I wish I could go through the screen and give him a hug.

 

Suddenly, I miss Tanya (my daughter), who is away in the US, studying.

 

Time has flown by. My children are now adults. Scenes from the past flash through my mind.

 

A two-year-old Tanya tugging at my blouse to get my attention – while I’m running language drills with Mohit.

 

A seven-year-old Tanya being upset with me for being late for her annual school function. Yes, I was late because I was at an IEP meeting at Mohit’s school.

 

A ten-year-old Tanya with tears running down her cheeks saying, “you love Mohit more than me.” And me desperately trying to explain, “I don’t love him more than you. He needs me more than you.”

 

Autistic-child-with-sibling

Tanya and Mohit

 

But over time I have realized that it is not the truth. All your children need you. Not just the one on the Autism Spectrum. Period!

 

It took me a while to learn this the hard way.

 

Please don’t repeat my mistakes. Instead, remember one priceless lesson from them:

 

Time is precious.

 

 

Here are some concrete steps that you can take now to ensure that your child does not feel like an outsider in her / his own family:

 

1. Take care of yourself first

 

Do you feel physically or mentally exhausted? Do you find that you spend all your energy in putting out fires? If yes, then you are in crisis mode.

 

You MUST take care of yourself first.

 

2. Remember: Both your children need you

 

Become aware of this. Say to yourself every morning, “Both my children need me.”

 

Most parents are so tuned to the needs of children on the Spectrum that they forget about their other child. After all, he can take care of himself right?

 

No! S/he needs you just as much as the child with autism. We have no idea how autism affects siblings of the child with autism.

 

3. Make a schedule

 

Early on in our parent training program, I hand parents a schedule form to fill out.

 

The five things that I look for in the schedule are-

 

a. Me time (alone time for both parents)

b. Us time (time with your spouse)

c. Guiding time (with child on the Spectrum)

d. Time with the sibling of the child with autism (often ignored )

e. Family time (interaction with the whole family)

 

The schedule serves as a visual reminder to fine tune the day, as a guide for families having siblings of children on the autism spectrum.

 

Here is the schedule that we use at SAI Connections. You can use it for yourself or the families you work with too. [Download Time Table Schedule]

 

4. Do not compare

 

Each child is unique. Each child is beautiful. Respect each child’s individuality.

 

I worked with a family where the parents were bogged down by the older child’s behavior issues. On the other hand, the younger one was a calm, helpful child who always topped his class. But they rarely spoke of him. Conversations always revolved around how upset they were with their elder son’s behavior issues.

 

It’s natural to be upset by the negative behavior of the affected child. But we must take time to look at the positives and encourage the child who is doing so well.

 

5. Play with all your children

 

Get on your knees and play with them when they’re little. Do things together.

 

Playing with a little child will help you and ground you too. Plus, when your children are older, they’ll share their thoughts and feelings with you.

 

Also remember, your time cannot be substituted by toys or the iPad. You cannot be replaced.

 
parents can take care of siblings to child with autism
 

6. Keep the channels of communication open

 

This is crucial, especially during adolescence.

 

Ever experienced the sibling asking you to leave him alone? That’s probably the time when he needs you the most. Look beyond the words. Look at actions. Be there for them, but in a non-intrusive way.

 

7. Set limits sensibly

 

It’s essential to set limits. However, while one parent is in strict mode, the other parent should be available for communication.

 

Recently, Anil set a limit on Tanya about spending. He was firm with her about budgeting her expenses.

 

She was upset. He was cool.

 

I put in extra effort to stay in touch everyday and talk about her health, her day at college etc. It’s important to maintain the balance in communication too.

 

My dear friend, Autism affects the whole family, not just the person diagnosed with it.

 

“I grew up believing that I was not worth anything. I felt I didn’t belong. I felt neglected”, a sibling of a child with on the autism spectrum told me.

 

Your ‘other’ child does not deserve to be an invisible casualty in this war called Autism.

 

You, the parent, can, and must, be the Shield.

 

“Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.” - Mother Teresa

 

8 COMMENTS

  • What a confession, very true..
    All seven points are good suggestion.
    But bringing up one asd kid takes up lots of time n energy. Yes it teaches us how to stay cool in every situation.. As getting upset does not help either….

  • Dr Mrs M R Ballal says:

    Nicely penned .

    • muskan bansal says:

      thank u so much for this blog dear mother as now i m also a mother of two one is 12 yr with asd nd little one is 3 .nd i totally understand what it takes n how one feels .reading ur lines made me feel i m reading my own heart as i cn visualise the situation . i completely agree with u nd always try to strike n maintain a balance in n between my darling boys.and with d help of ur suggestions i will be able to do it more successfully i m sure. thank you again

  • Your article highlighted the reason that I am starting social groups for siblings of special needs kids, which I have named MY TURN, INC. I have seen this happen with my 12 year old daughter. She is so helpful to her 15 year old autistic brother, and to me in caring for his needs. But she needs time as well, and a chance to get to know other kids in her same situation. Please check out my website and let me know your thoughts.

  • Madeleine, what a lovely idea.
    Siblings take on much more than we know. Often, they mature much faster than their peers! They need all the support that they can get.
    Knowing that there are other siblings going through the same thing would be so therapeutic.
    Congratulations on this brilliant initiative :)

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