Many of us know of someone who has a child with autism spectrum disorder “ myself included. I can’t begin to even imagine what the journey must be like for families with autistic children, but I do know that it can be hugely transformational.
Hearing a friend of mine, Avak, talk about his family’s journey and reading his daily updates through Facebook, I have noticed that his journey had been an incredible one, and different to many that I hear. If you or your family have been touched by autism, then this article will hopefully be uplifting, encouraging and a breath of fresh air. I asked Avak some questions about his journey and here are his responses below.
Can You Tell Us About Nicholas and When He Was Diagnosed With Autism Spectrum Disorder?
Avak: Nicholas was born on the 8th of May in 2004 (8 yrs old) and was diagnosed when he was 3 years old. He is a happy boy with lots of energy and eye contact and has a great desire to interact with others when motivated. He has no clear language at present, but uses physical gestures to get what he wants.
What Did You Notice Before He Was Diagnosed?
Avak: By the age of 3 we noticed that he wasn’t interacting with others kids, had lots of tantrums around other people and in busy environments, like kids birthday parties etc. Nicholas had very little eye contact, no language, wouldn’t respond to his name, would hate physical contact like cuddles and hugs and we started to see his ‘ism’s’ develop, which are the repetitious exclusive unique behaviours.
How Did Family and Friends React To The Diagnosis? Does Anyone Struggle With It?
Avak: Everyone was okay with it once we as parents became okay with it. My mum still finds it difficult to accept and gets emotional about it.
What Does Autism Mean To You?
Avak: Autism is a GIFT to those that are touched by it and choose to see it that way. Nicholas’ autism has taught us to be more loving and accepting, have more fun, let go of needs and judgements and be present in the moment.
What Professionals Did You Seek Out To Help You With Autism?
Avak: We first saw a paediatrician who not only gave us the diagnosis but the prognosis, which was not that exciting. We chose not to buy into it. We then saw a speech pathologist early on, then Nicholas attended a early intervention group. We did ABA (applied behavioural analysis) for approximately 4 months, then floortime & RDI (Relationship Development Intervention). Finally for the past 3.5 years we have been running a Son-Rise program which has been the most amazing process and journey. Nicholas has had much success in terms of his development. His eye contact is normal, he interacts more so, responds to his name and instructions really well, making a lot more verbal sounds and is seeking human interaction.
What Organisations Have Been Of Great Help and Support?
What Have Been The Most Difficult Moments In Your Autism Journey?
Avak: When Nicholas tantrums and you don’t know what he wants.
What Have Been The Most Rewarding Moments?
Avak: When Nicholas smiles warmly and comes over and gives a hug or a cuddle.
What Do You Believe Are The Best Things Parents Can Do To Help Their Autistic Child?
Avak: Be loving and accepting and non-judgemental and know that your child is doing the best they can with, have flexibility in your approach, let go of the needs and go for the wants, have fun, be playful and outrageous when necessary.
What Do You Believe Are The Best Things Parents Can Do To Help Themselves?
Avak: Be loving and accepting and non-judgemental of yourself and know that you’re doing the best you can with what you know, have flexibility in your approach, let go of the needs and go for the wants, have fun, be playful and outrageous when necessary.
Have There Been Any Specific Changes Or Activities You Have Done At Home That Has Made a Difference?
Avak: We run a full time home therapy program with a playroom set up to spend one on one time with Nicholas. To achieve this we have recruited a team of volunteers and trained them up with the skills, understanding, love, playfulness and commitment to spend time with Nicholas helping him in the areas of language, eye contact, flexibility and communication (being both verbal and non-verbal). We also have team meetings every fortnight to discuss the goals we have set for Nicholas, his progress, sharing magic moments, challenging moments, brainstorming games ideas, doing personal development exercises and helping each other grow to become more effective.
This process has helped Nicholas immensely over the last 4 years of running the Son-Rise program. He has improved massively with his eye contact, where before he had trouble looking at people, to now he can look at people easily and freely when he wants something or wants to interact. He also has increased his ability and desire to interact with others and has longer periods of interaction.
His interactive attention span was 5-30 seconds, now he can play for up to 30mins to an hour, especially in the games/activities that he’s motivated by. He is so much more affectionate, able to give hugs and cuddles and also responds well to instructions, when we call out his name if we want his attention. Overall this journey, has helped us (his parents and Team Nicholas members) to grow and become more playful, loving, accepting, non-judgemental, flexible and to let go of needs that aren’t important. His Autism has actually been our greatest gift!
What Is The Best Piece Of Advice You’ve Heard About Autism?
Avak: Decide that Autism is a gift!
What Would You Recommend To Someone Who Has Just Had a Child Diagnosed With Autism?
Avak: See your child’s Autism as an opportunity for your own personal growth “ and your own happiness has nothing to do with how your child is behaving or doing.
What Would You Recommend To Someone Who Is Losing Hope With Their Child’s Progress?
Avak: I would recommend they visit www.autismtreatmentcenter.org and contact them for their free 25 minute phone consult and speak to someone who can guide them in the right direction.
Any Other Comments, Advice Or Resources You Recommend People Read Or Source?
Avak: Read the books “Happiness Is a Choice, “Son Rise: The Miracle Continues and “Giant Steps by Barry Neil Kaufman, also believe that your child’s potential is limitless and go for all that you want!
To find out more about autism, you can read BellyBelly’s article: