*The translation of this article in French, German and Spanish has been made through machine translation and has not been edited yet. we apologise for any inaccuracies.
Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that affects millions of people worldwide. Raising a child who is on the autism spectrum can come with numerous challenges, but it can also be a rewarding and fulfilling experience. Recently we spoke with two of our own M3 Global Research employees who shared their experiences as parents of autistic children. Patti Wood, associate director of quantitative operations in the US, and Janelle Foster, project director in the UK, are two mothers from very different corners of the world who share a common bond of being dedicated caregivers to daughters with autism. Here, Patti and Janelle share their experience as autism caregivers, providing insight into the reality of parenting an autistic child.
The First Signs of Autism
When Janelle’s daughter Jessica was two and a half years old, she noticed she never sat still and initially thought she might have Attention deficit hyperactivity disorder (ADHD). Janelle says, “Relatives and family members said not to worry, she’ll grow out of it, and she is just a busy child. It was challenging for us because whenever we’d go out, we’d have to keep a close eye on her, so she didn’t run off“.
Janelle explains, “In the UK, at two and half years old, they do a checkup for social and emotional development. It was a group checkup where she would interact with other children. The specialists there determined based on her behavior and how I answered the questionnaire, that my daughter had a developmental delay. They referred us to a paediatrician“.
However, the pediatrician appointment took a long time to book. In the meantime, Janelle searched the internet for information about autism and behaviours, finding a list of things the internet referred to as red flags, Janelle describes, “Things like spinning around, getting into small spaces, repeating things from the tv that I now know is called echolalia. It was like a checklist, and I could literally check everything“. Janelle goes on to say: “Red flag is a term I saw a lot in my initial searches, but I just can’t stand it; it’s made out to be this terrible thing and it’s really not“.
Individual Differences in Autism
Autism Spectrum Disorder is a complex diagnosis that cannot be easily defined by one set of characteristics. It is a spectrum that encompasses a wide range of abilities and disabilities. For some children with ASD, physical contact can be overwhelming and unpleasant, while for others, it may provide a comforting sensation. The same can be said about intellectual abilities. Some individuals with Autism Spectrum Disorder may struggle with academic tasks, while others may excel far beyond their peers.
Janelle further explains that it’s “a different wiring of the brain, a different way of processing a unique way of thinking. If we can understand each other’s differences, we can appreciate them rather than fear them. Acceptance and inclusion are so important. Opportunities to socialise are necessary and it’s important to be invited to things like birthday parties and not be excluded due to a diagnosis. It’s important to understand the behaviour of an autistic child with special needs. Some parents described sensory issues like sensitivity to clothing, we didn’t have that, which shows what a spectrum it truly is. So many different traits that some have and others don’t. Ignorance can be frustrating. I’ve learned not to judge anyone. For example, when you see a child having a tantrum in public because you don’t know the whole story of what is going on. Also, not all of us are “a little bit autistic” which bothers people who are truly autistic”.
“In Jessica’s case”, Janelle continues, “The main issue she has had was making friends, which doesn’t come naturally to her. She likes to boss them around and initially, instead of with them, she would play alongside them. She doesn’t have social awareness or boundaries and she is more comfortable talking to adults than children. She also doesn’t have a concept of personal space; she will touch someone when talking to them. She becomes obsessed with things for a time, for example, we watched a show where people were wearing jeans and she became obsessed with jeans and people who were wearing jeans. I would have to tell her not to examine the pockets of jeans on strangers while out in public or shopping.”
Janelle joined a parenting course in the “UK called More Than Words” to help with communication. During this course, the administrator mentioned that based on her observations, she could speak to the pediatrician to confirm the diagnosis, without the family having to formally go through an assessment process. “Diagnosis was fast-tracked for us with a group call between the pediatrician and the “More Than Words” virtual course leader in January 2021. For some families, it can take years for an autism diagnosis, so we were lucky.“, Janelle explained.
Autism Support System is Key
For Patti Wood, mother of a now teenage daughter, Sarah, the signs that Sarah was neurodiverse also became evident early on, however, she was not officially diagnosed until the age of five. Patti explains, “She was quick to have meltdowns such as uncontrollable crying/tantrums/frustration over the smallest of things. She was very clingy to me; any pattern or schedule disruption was difficult if not impossible for her to cope with. The way she played with her toys was very methodical. How she ate, one thing at a time – all the green beans, then the potatoes, etc.- and her aversion to specific textures, smells, and sights. She also had a serious aversion to light and struggled to sleep through the night“.
Patti mentions that Sarah now has a great support system through her school, friends, and physicians. “Autism Speaks is a great resource for those with both newly diagnosed and established parents of kids with autism.” Patti says, “I have also found great success with keeping a journal of her symptoms and behaviours as she has grown to keep everything straight for all the doctor’s appointments. I also taught her to use the app, Calm, to soothe herself when things get to be too much and helped her find a community of kids just like her to share experiences with through Facebook“.
Like Patti, Janelle mentions the resources at her daughter’s school are very supportive. Additionally, she mentions, “We are lucky we don’t need a lot of support. Jessica can communicate well enough with children her age, the main issue is preparing her for change.” Janelle describes one of the tactics used to cope with change is to prepare Jessica with a social story. Social stories help let Jessica know generally how things will be if there will be anything outside of her normal routine happening that day. Janelle has also found support with the “Nurture Group” offered at Jessica’s school every week. She says, “It is helpful with behaviour issues like sharing, taking turns, and needing to control things in a social interaction.” Janelle also mentions, “I worry about her maybe falling between the cracks because it comes across like she is coping, is doing a lot of work internally and at home to prepare her for situations in advance. So, it might seem like she is doing ok, but underneath she is going through the coping mechanisms to get through situations, such as resisting the urge to control social interactions“.
Self-Care for Autism Caregivers
While many neurodiverse children find support with the resources at school, it can be difficult to find the time for autism caregivers to find support for themselves. Parenting is a tough job, and when it comes to raising an autistic child, the challenges can be even more overwhelming. It is normal to experience a wide range of emotions, from anxiety, to joy, to worries about the future. While it is essential to take care of yourself both physically and emotionally, it can be a struggle to prioritise yourself. Janelle agrees, “When you are a working parent it’s hard to participate in support groups run during the day. I joined Facebook forums, but I don’t participate much in them“.
Patti finds support as a caregiver from her friends, husband, and therapist. She says, “They all support me, listen to my frustrations and fears, and share my joy when Sarah succeeds – especially in those things other parents/kids take for granted. My therapist is especially supportive, as she has seen it all; we’ve been together since Sarah was born. I cannot recommend talking to a therapist enough. Everyone needs a place to release all the feelings associated with being a mum of a neurodivergent kiddo“.
The Joy of Parenting an Autistic Child
When asked what her favourite part about parenting an autistic child is, Patti goes on to say, “Taking joy in the little and big things. I really fretted when she was diagnosed, about what her life would be and the funny thing is, she taught me that her life is exactly what it is supposed to be. Sarah taught me about kindness, acceptance, and patience. My favourite part is learning from her how to be a better human overall, by doing so, I’ve seen her go from a kid that struggled with life, school, and social situations to a kid that is graduating from High School with her peers and has early acceptance to a well-regarded university. The pride I feel makes my heart swell three sizes. I have no doubt I would be just as proud if she were neurotypical but the fact that she is not, makes it all that much sweeter to see her soar“.
Janelle beams when she speaks about her love for Jessica’s super senses. “Her ability to spot planes in the sky when they are just a tiny speck to others! Jessica’s personality is very big and confident, and I like that and don’t ever want a diagnosis to change that. I appreciate the fact she can say what she is thinking without a filter. Her memory is incredible, down to details from years ago to the clothes people were wearing on a certain day”.
As an experienced mother, Patti offers this advice for parents with newly diagnosed children: “Be patient - with yourself – you will lose your cool more than once and that’s ok. Be an advocate for your child in the school system. No one will fight for your child the way you will. One day, you will see them fighting for themselves, advocating for themselves and you will know your very special child has changed a small piece of the world – and you in the process“.
If you are a caregiver of a loved one who lives with autism spectrum disorder, sign up to be a part of our caregiver panel. Provide your experience to help influence future available treatments and get paid for your time.
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