Autism x 2 : What Happens When Your Second Child Is Diagnosed

My son Marc was 2 years and 10 months old when he was first diagnosed with autism. I’d had clues: Marc wasn’t reaching certain developmental milestones like responding to his own name or waving bye bye. When I found out that Marc was on the spectrum I was devastated, but I was also relieved that my other child was a girl because I thought there was little to no chance of her having autism too. By the time Julia was 16 months old, I was rethinking that. Like Marc, Julia wasn’t exhibiting age-appropriate behaviour: there was no baby talk and she wasn’t responding to her name. One year after Marc was diagnosed, I was told that my second child was also on the spectrum. I will never forget the moment I received the diagnosis.  I went through so many emotions and felt life was being completely unfair to me. I was full of resentment over having a second child with autism.  The second diagnosis seemed impossible – how could this happen in one family?

What was hard in the early years was the level of difficulty each child had and how differently those difficulties presented themselves.

Our son, Marc, had no language until he was almost 5. He relied on stimming to help with anxiety and self soothe; engaging in video rewinding and obsessing over ceiling fans. His play centred around arranging toys. It took him hours to fall asleep at night and he woke up frequently throughout the night. Marc followed a strict gluten-free/casein free diet from age 15 months on. He had frequent meltdowns and was hypersensitive. A paper cut could result in a 3 hour crying fit.

Julia, two years Marc’s junior, had the same language difficulty and also didn’t speak until nearly age 5. She would fall asleep at night, but wake at 2 am as if it was morning and run around the house like a whirlwind. She had more imaginative play, concentrating on figurines and dolls. Julia was not a stimmer. She was more stubborn than Marc and socially anxious and withdrawn. Julia would hold on to my leg all day. It took one year of therapy to get her out of the house successfully to do outings. She followed the same diet as Marc but would not eat the same foods within the diet. She was hyposensitive, requiring a high degree of input and had a high pain tolerance.

Even with siblings, one size doesn’t fit all.

While there were similarities between both children like toilet training difficulties, sleep disturbances, restricted diet, difficulty transitioning, anxiousness and sensory integration disorder, their learning styles and how these challenges presented themselves required different approaches.  For example, Marc communicated using PECS; Julia used sign language. Both children had completely different therapists because their learning styles varied. Marc loved using a Time Timer; Julia felt anxious about it. Each child was motivated by something different. Marc was eager to please; Julia didn’t care what anyone thought.

When it came time to start school, Marc clearly needed a specialized setting with a high level of aide support; for Julia, an inclusive setting. The decision for these two educational settings was the right one and both flourished. Marc received more therapy for a longer period of time than Julia did. Marc had speech apraxia; Julia did not. They are both in high school and are now in the same specialized setting although Julia can handle more independence. Each follows a curriculum designed with their needs in mind.

While the original diagnosis sent me into despair, I have seen a beautiful friendship develop between Marc and Julia over time – something that many people with autism struggle to find.

They are best friends and rarely have a disagreement. They are interested in each other’s passions. They are willing to try what makes the other one happy. The most important thing for them is to be together, whatever the activity. Even though they have such different needs, I am impressed how they fold into each other’s daily routines. Julia takes on more of a caregiver role with Marc, and he is happy to be cared for by her. Marc can interpret every whine and facial expression Julia makes, and she does the same for him.

Having two children on the spectrum has taught me how unique each child is even with the same diagnosis. Boys and girls present differently. You have to be flexible in your therapeutic approach because what works for one child doesn’t for the other one. You have to develop different strategies for each child. You can learn from your mistakes on the first go-round and adjust for the second child. I read many books emphasizing different approaches to find information on what I could try for each child.

Expectations change with raising multiples – not only for the children, but for yourself. I am an expert at self-preservation because I know how hard it is to keep two children with autism happy and healthy. I need to be as fit and well-rested as I can be to tackle each day. Nothing has come easily, but I want to encourage new parents facing a second diagnosis that it’s not the end of the world. Just remember that each child has unique needs and what worked for one child may not work for the second or the third. It is easier for us to adapt to the children than the other way around, so develop flexible thinking. Learn what is motivating for each child, how they communicate, what their learning style is. As the saying goes, if you’ve met one child with autism, you’ve met one child with autism and this applies to children within the same family too.

At the start of my multiple autism diagnosis journey, I thought this was the worst thing that could happen, but now I wouldn’t want it any other way.

Marc and Julia will always be together and have each other. They take delight in each other’s company. They accommodate and respect each other’s difficulties and preferences. Julia is stronger physically and better with life skills, but Marc has better academic skills and is less socially anxious when in public. Alone they might have never developed the communication and support skills that they have learned with each other. Together they are stronger and make an excellent life-long support team.