7 Facts I Wish I Knew When My Adult Autistic Son Was Newly Diagnosed

Time goes by in a flash.
It was Mohit’s birthday 2 days ago. He turned 31.
As I reflected on our life gone by, I wished somebody had shared these important truths with me when Mohit was younger.

 

In the past few weeks, I’ve heard the following words from parents.

 

I’m exhausted- I just can’t work with her anymore

– Mother of a 23 year old young woman

I have no time for me. I’ve lived my life for my son and family members

-Mother of a 21 year old young man

I no longer have the strength or the willingness to work with her anymore

– Mother of a 15 year old teenager

Can I just hire somebody? I’m just not able to do this. He doesn’t listen.

– Mother of a 30 year old young man

 

28 years ago when my son was diagnosed with autism, I was of the mindset that if I worked hard enough with him for a few years, he would be ‘cured.’

 

So I worked hard. Sometimes 4-5 hours a day besides his school hours.
Most of that time was spent on table top activities to teach him discrete skills.

 

And as expected, after a few years, I burned out.

To all the parents out there, I know how you feel. I’ve been in your shoes.

Our early years, following the diagnosis, were packed with an active, overwhelming lifestyle based on building language and academic skills.

 

After 17 years, RDI came into our lives.
Then we focused on building a relationship and an emotional connect between us. Today we enjoy a much more relaxed life. I no longer look around frantically for a ‘cure.’
I know autism is a way of being.

 

If I were to go back all those years and share some important pointers with the young Kamini, this is what I would share.

 

Read on. I’m certain these pointers apply to you.

 

1. Take care of yourself- first

 

We often forget to do this.

 

What is your ‘me time’? Do you make time to do what you love?
Take some time out.
Exercise, eat right and stay fit.

 

I wish somebody had said to me, ‘It’s not your fault. You didn’t do anything wrong. ‘
That would have taken a big load off my fragile shoulders.

 

So here I am, saying to you. “it’s alright. It’s not your fault. Hang in there.
It will all work out.”

 

And don’t forget ‘me time’ and ‘us time’ (time with your partner, too)

 

2. You can’t do everything. Do what is important

 

It’s alright to have help.
Get help where necessary.
If you can get some help and support with cooking, cleaning, other house hold chores, by all means do it.

 

You don’t have to do everything by yourself.

 

Your main job as a parent is to focus on building a beautiful relationship with your child.
That cannot be outsourced. Invest your time and emotions in building that relationship.

 

3. Don’t be frantic about academic skills but make sure self help skills are in place too

We spend a lot of time on academics and skills as they’re growing older. This is fine. But please don’t feel pressured.

 

It’s a myth that the brain develops only upto age 7(as was previously thought).

Due to neuro plasticity, the brain continues to develop through life. You have time.

 

It would be wise to spend time on self help skills.
Make sure your child is self reliant in dressing, bathing, toileting. Later on in life this could be problematic.

 

It is most painful for me to see adult students who may not be independent in skills of daily living such as bathing and brushing teeth.

 

A mother of a 10 year old shared how embarrassed she was when people around her were staring at her for feeding her son!
She immediately realized how odd it looked.

 

It makes total sense to spend time on teaching self help skills. This is a definite step towards independent living.

 

4. Don’t get too fixated on static intelligence. Build the dynamic piece too

 

I spent an immense amount of time on static skills.
What’s this, touch head, find (name of object), what’s your name?
Basically one question/instruction with one right answer.

 

Whenever I ask a parent what they want, they say they want their child to be happy and independent.

 

What does that translate to?

 

Untitled

 

While static intelligence may give your child skills (yes, these are important), but dynamic intelligence will help your child understand where and in what circumstances to use skills.

 

For example- you can teach your child words, but how to use these words in a conversation falls under dynamic intelligence.

 

You may teach your child sentences, but they still need to know when its good enough to interrupt and how to listen when somebody else is speaking.

 

The only thing constant in life is change.
It’s important to learn to deal with changes. Flexibility and adaptability are the hallmarks of dynamic learners.

Unfortunately, these are the areas badly impacted by autism.

 

If we really want our children to be independent, then it’s worth our while to spend time building dynamic intelligence.
This is beautifully taught through the RDI Program.

 

Watch

 

Watch me in this interview with Reena Singh (Khushi) to get a glimpse of RDI.

 

5. Get out of outdated mindsets. Stay current instead

 

What worked 20 years ago is not relevant today.

We’ve listened to many professionals sharing their expertise about autism. It’s time to listen to autistic individuals. They are the experts.

 

“For autistic individuals to succeed in this world, they need to find their strengths and the people that will help them get to their hopes and dreams. In order to do so, ability to make and keep friends is a must. Among those friends, there must be mentors to show them the way. A supportive environment where they can learn from their mistakes is what we as a society needs to create for them.”
– Bill Wong, Autistic Occupational Therapist
What makes a child gifted and talented may not always be good grades in school, but a different way of looking at the world and learning.”
– Chuck Grassley

 

6. Don’t clump everything under autism. Differentiate between the core deficits and the co occurring conditions

 

There are the core deficits of autism. And then there are the co occurring conditions.

 

Core deficits of autism are:

 

a) Difficulty in sharing experiences
b) Difficulty in understanding another person’s perspective
c) Difficulty in learning from the past and applying it to the future
d) Difficulty in going with the flow and being flexible
e) Difficulty in understanding their role in a dynamic situation

 

These core deficits are shared by everyone on the autism spectrum.

 

The co occurring conditions could be related to speech and behaviors.
Some people on the spectrum have these issues, but not all.

Read more about this, here.

 

 

7. Prepare for a marathon- a healthy balance of life

 

People who run marathons work consistently.
They run 3-5 times a week. They also rest between runs.
They take good care of their bodies by staying in shape and gradually increasing their stamina.

 

Your life with your autistic adult is a marathon and not a sprint.
You need to prepare differently to run a marathon, particularly this marathon of life.

 

 

 

Conclusion

 

Be prepared. Be wise.
You may think your child is young and you need not focus on these 7 pointers.
But time flies by. It doesn’t wait for anyone.

 

I remember Mohit being ‘just 3’.
Today is a young man of 31.

 

“An autism diagnosis will change every aspect of your life, from the way you relate to religion to the way you select your salad dressing,” “You can lose yourself in autism, but you can also find yourself.”

 

– Lisa Lane (Mother of an autistic adult)

 

Your shoulders will grow from being fragile to being strong.

It’s time to evolve.

 

 

Kamini Lakhani

Kamini Lakhani is the founder and director of SAI Connections. She has been providing services in the field of autism for more than 25 years and is the authorized director of Professional Training for RDI in India and the Middle East. She is also the mother of a young adult with autism.

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