Practical tips for parents suspecting an Autism Diagnosis

Finding out my little Bry, my first-born, had Autism was heartbreaking. I had suspected he was on the spectrum since he was about a year old, but I was hoping all the scary signs I watched him exhibit would go away. He wasn’t pointing or clapping, he was minimally verbal, he loved to play with tires of toy cars, and he flapped his hands when excited. I stayed up late at night browsing autism websites, obsessing over the signs of autism, language delay and genius children with strange behavior, hoping that he was the latter two. Sometimes, I was convinced that Brian had Autism only to relent seconds later and tell myself that he was just a very smart child with language delay. This was the bittersweet torture I put myself through day and night for almost a year after my initial suspicion.

Finally, I decide to seek a professional diagnosis. I live in Nigeria and our health system is not equipped to provide international standard developmental assessment or intellectual disability support; authentic services are limited and hard to find. Autism is still a very new and under explored area, awareness is poor, doctors are overburdened with other priorities like communicable diseases and frankly, our society just doesn’t care enough about Autism yet. It is harder for mothers of children with Autism and developmental delays in Nigeria. I am Medical Doctor, I work in one of the biggest teaching hospitals in Nigeria but it took me almost another year to find an authentic center where my son could be properly diagnosed based on international standards. I constantly wonder what mothers who are not working in the health system have to go through. 

The day I went for Brian’s assessment, my partner was busy, yes – Busy! He could not make out time to hold my hand and be there for our son. I still ponder on that till this day. It was just 4-hour appointment, 4 important, anxious, nail-biting, stressful hours that would have been half as bad if only he were there. When I got the pre-diagnosis or what you could call a summary of observations, Brian was suspected to have moderate Autism, he would need significant support to build the required skills to cope with daily life activities. CRACK!- the sound of my heartbreaking. A dull ache in my chest, a build-up of fear in the pit of my stomach which ends up as a huge lump in my throat, which I’m unable to swallow for the rest of the day. I look at my child and I don’t see him… he seems strange to me. He’s playing in that same animated way he does, he’s so distracted, now and again he makes eye contact and smiles, but his attention span is so limited, he’s off to do something else. At that moment, when I receive the diagnosis of Autism, I could no longer see the Brian that made me laugh so hard with his lively behavior, that made my heart swell with pride whenever he recited a whole cartoon show (without mistakes), spelled 4 letter words or attempted to read. I could no longer see the good parts, I saw Autism -  I saw a child who needed my help, who I must shield from ridicule, who I must protect mentally and physically.  I looked at my son and thought with a fast sinking heart – 

“ What now? What next? Oh Brian! What are we going to do? Will you ever be okay? Are you ok now? Will you ever get married? Have sex? Be fulfilled? Be a parent? Be successful? Be happy?” 

I want to bawl my eye’s out, but I don’t I have always been brave and not too good at showing my emotional side in public, so I stick up my chin, make a future appointment and go home with my little strange boy.  I knew I would have to wait another month at least until the final assessment report and diagnosis was delivered.

I pray as I consider myself to be a God believing mother and born again Christian. I had prayed to God specifically for a “special child” and God had given me Brian. Getting home from my assessment, I find myself praying again. This time I prayed for my son to be typical, to be a normal child, I prayed that the doctors were wrong, that they would call me and say they had made a mistake. Who’s report did I choose to believe, God’s report of course! And God’s report said my son is whole, perfect like the Father, and at peace. I prayed for God to end my nightmare! I prayed for hours in my heart, I prayed while bathing my son that evening, while feeding him, doing the dishes, cooking dinner, watching TV, completing research work, I was praying, praying till I fell asleep. Finally, when I felt calmer through prayer and from the sheer exhaustion of everything happening, I prayed for God to send me help and support to get us through the nightmare we were in.

A few days later I received an invitation to join a support group for Autism parents.  It was so strange because I had not shared the diagnosis with anyone yet. The invite came through our Resident’s Doctors Whatsapp group where we share health information. It was as random as it was timely – " Grace from God to help in my time of need”.  I immediately join the WhatsApp group called “Coffee Sessions”, and it was one of the best decision’s I’ve made since Brian’s diagnosis. It’s so hard finding good support groups for Autism in Nigeria!

The next step for me was planning. Massive planning. What interventions did we need? How were we going to schedule them? Would he have to stop mainstream schooling? What could I directly help him with at home? I brainstormed, I researched, I found resources online, and I bought resources in the form of books, educational gadgets, and toys. I prayed some more! I found focus somehow and didn’t let go of it. I create a solid goal for Brian in my mind and on paper, a plan to help and support my son in gaining behavior, socialization and communication skills appropriate for his age. My goal is a huge and lofty goal, but because of this goal, I am driven, I am desperate, I am consistent, I am mother, I am always learning, always evolving and now we are seeing solid results – Brian is growing, learning, becoming more verbal, gaining skills! 

With Brian’s diagnosis, my support group, my plan, and God I felt more stable, I could get on with life and Autism. Some days are so hard! Others are full of hope. Sometimes Brian surprises me with how much he knows and has learned, on other days I’m scared because he still doesn’t get the difference between something as simple as - “me” and “you”.  I pray and try to move on from a fresh dose of despair, the trick is not to linger there, don’t lose sight of your plan.

At some point, you would have to share the diagnosis with friends and family. Everyone’s reaction will be different. For me, my mother’s face fell, her face literally crumbled when I told her.  Her sadness was very evident, but there was also relief there, relief in knowing what we were tackling.  Finally, she understood why her grandson wasn’t connecting with her like her other grandkids. She said to me,

“ I know children with Autism as so difficult, but I believe God’s report. Brian will talk…..” 

She was determined to pray his Autism away and I didn’t argue with her.  My mum had destroyed many challenges through prayer, somewhere inside I'm hoping it will work. 

One of my sister’s reaction was stark disbelief then denial. She looked at me like I had lost my onions. She laughed and swept it under the carpet immediately saying, 

“Brian? Autistic? Nah…!”

She had said it with such conviction that I almost believed her. 

One of my closest friends looked like she was going to faint.  Her distress was so profound that she was hyperventilating. She looks at me straight in the eye and I would never forget her response to my revelation. 

“You are the one with Autism! Not Brian!” 

I laugh every time I remember that now. OMG! You will see many varied reactions!

Sharing with family and friends was however very empowering for me, it brought closure. It was no longer a secret that I had to keep. I didn’t need to keep explaining why Brian didn’t answer his name like other children did when called, why he could only say “hello” and “I’m fine” over a phone conversation, why he wasn’t asking the “when, what and why” questions, why he didn’t exhibit joint attention, why it seemed that he wasn’t listening when spoken to. However, I quickly learned that I had to put my foot down on some things within my family and social circle, to protect my son. I had to set rules and boundaries and reinforce them every time I was around family and friends until they became our norm.

After the diagnosis, it was all about Brian and our BIG PLAN. I totally neglected myself and focused on working hard on him. At some point, it seemed like all we ever did as mother and child were try to learn skills.  It had become too tedious and stressful for both of us, so I eased off a bit. I reminded myself that Brian was not just Autistic, he was also just a 3-year-old child. Sometimes when he throws tantrums, it is not the Autism, it’s because he’s upset and needs a hug.  Sometimes when he doesn’t answer a question I ask, it is not Autism, it’s because he’s tired and needs a break. Sometimes when he doesn’t want to do sequencing with cards and shuts down before my eyes, it is not the Autism, it is simply because he wants to play instead. I had to learn to see my Brian again and in seeing Brian, I also saw myself. I learned to remember I was more than a mother to an autistic child, I learned to remember my passion for women’s health and the charity I had set up in 2007. I learned how to get to work on time again and how to truly engage with clients at the clinic. I learned how to make new connections within and outside the Autism circle.  I learned to discuss my favorite pastimes, go to the movies, get my nails done, buy clothes and shoes and bags instead of Autism resources. I learned how to look good again, to get a manicure, to get my hair done, to enjoy life by myself, with my son, with family, and with friends. In a nutshell, I found closure and purpose I decided to move forward with my life- you should too. 

The piece “Welcome to Holland” by Emily Perl Kingsley really helped me get there. It helped come to terms with what I was dealing with, it gave me hope and still does. After reading it, I allowed my self to cry over and over, as many times as I needed. Did I already mention crying is great therapy?

My top advice for parents who suspect Autism are:

1.    Get a Diagnosis! -  Stop second-guessing yourself, trust your instincts. Don’t keep plaguing your self with unanswered questions and speculations, don’t waste time on Google seeking answers, don’t ask friends and strangers on social media what they think. Get a developmental assessment and a solid DIAGNOSIS from a Specialist Developmental Paediatrician. 

2.    Get a diagnosis from professionals – this is easier said than done in a developing country like Nigeria, as we just do not have adequate healthcare services that support intellectual disability diagnosis and management. Speak to a pediatrician preferably at a teaching hospital and they should be able to guide you to the right hands in your community.

3.    When you get the Diagnosis, allow yourself time to take it all in. Be sad, cry, scream, you’re entitled to these flood of emotions. Ask your God or Mother Nature - Why me? Why my child? Pray for divine intervention, pray to find a reason, meditate, marinate, but don’t dwell here too long. I allowed myself "A day of despair!", then I started trying to move on. It takes time to really build momentum and move on to a better place and state of mind, so go easy on yourself.

4.    Find closure – Come to terms with the situation, seek and find some sort of peace about it. Without closure, you cannot truly move forward. Read the piece “Welcome to Holland” by Emily Perl Kingsley. Read it as many times as you need to.

5.    Find Purpose -  Set a realistic goal for your child. Create it in your mind, write it down on paper, write down what you want to achieve with every year that goes by, revisit your goals often, set new goals as your child is sure to improve. Have a plan, get interventions started and be involved in your child’s growth, failures and victories - “ No one can fix your child, but YOU can darn well try!” When a therapist or teacher tells you your son is doing great, be happy but ask what areas they are still concerned about and find ways to support your child in those areas.

6.    Share the Diagnosis with those you trust who truly care about you and your child enough and will be of help along the way. Note -  Not all friends and family will understand or be interested in your journey with your Autistic child. Tolerate them or weed them out! Always move forward, don’t let anyone hinder your child’s progress.

7.    Cry – when you must, let it out, it is great therapy.

8.    Remember to LIVE. Live your life, and allow your child to live also, within and outside the awesome world of Autism. Remember your child is not just his diagnosis; he is a person with feelings, a soul, needs, joy, sadness, laughter, interests, curiosity, love. Work him hard, but remember to let him be exactly who he is. Enjoy your life, do the things you love, take care of your body and health, find new friends, passions, and hobbies, be a mother as well as other things.

9.    Pray – Never stop believing your child will recover. Many children diagnosed Autistic have fully recovered, many have improved dramatically, many have gained enough skills to cope with daily life, many still struggle, many will struggle for most of their lives, but keep hoping your child will fully recover. This hope is like fuel to drive your efforts, you will never tire! Have hope – PRAY. Pray for a good partner, supportive family, wisdom - PRAY.

10.  Raise Awareness -  You don’t have to carry placards and scream to the world that your child is Autistic but you do have to inform those around him for his own protection. Talking about autism increases tolerance, fosters acceptance and reduces stigma. Tell his teachers at school, caregivers at Sunday school and at the playground, parents at Birthday parties. I had a long conversation with my child’s principal in his mainstream school and with his teachers. They struggled a little with the idea but are now well aware of Brian’s challenges and that it’s not just something he will outgrow. They even have tips and resources for when he has tantrums or meltdowns now. When I meet someone new who has to watch my child for the first time, even if it’s just for 2 minutes, I tell them he is on the Autism spectrum and I don’t leave it there, I explain why they have to keep a closer eye. I explain to them that he has difficulty communicating and focusing so they may have to ask him the same question they ask other kids his age with a louder voice and in a quieter environment. I tell them he has challenges socializing so they may need to help him say hello and make friends, I tell them he may exhibit peculiar behavior like stimming or repetition, so they don’t judge him and look at him strangely. Most of all tell, I them not to treat him any different from other children in the room, no preferential treatment, no carrying him around or treating him like a poodle! Just extra awareness for them to have while watching him. Don’t ever be ashamed to protect your child by informing others, it takes less than five minutes to explain this to a new caregiver and many people I have informed feel empowered, they don’t say it often but deep down they appreciate the heads up.

11. Here is the piece “Welcome To Holland” by Emily Perl Kingsley.  Happy reading…

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never ever, ever, ever go away...because the loss of that dream is a very, very significant loss. But ... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things.. about Holland.

C1987 by Emily Perl Kingsley. All rights reserved

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To share your concerns about your child's development, visit us at The Community Health Outpatient Clinic, Lagos University Teaching Hospital (LUTH) - Idi-Araba. Accident and Emergency building, 2nd floor, Tuesdays and Wednesday, 9am-1pm. 

To get a full developmental assessment for your child, contact the Children's Developmental Center  (CDC) at 31 Modupe Johnson Crescent, off Adeniran Ogunsanya Street, Surulere, Lagos. +2348023176525, +2349095524021, info@cdcafrica.org.ng, https://cdcafrica.org.ng/