April: Autism Awareness Month
It’s no secret that people living with conditions such as autism experience high levels of stigmatisation, particularly within our community. This stigma stems from a lack of understanding, awareness and appreciation of all the great ways that autism can positively influence the way we see the world and others around us. The best way we can break down the unfair and ill-informed perceptions of autism is by learning more and loving more.
Autism is a disorder of development which affects language, social skills and behaviour. Thus children with autism interpret the world and what is happening around them, in a way that is different from other children. Every person with autism is different. They may have severe problems in language, social skills and behaviour, or mild problems in each of those areas, or alternatively more difficulty in one or two areas. These difficulties will vary as they age and they also depend on factors such as their gender, personality, family and cultural circumstances, and intellectual ability.
“Your son is autistic” the doctor announced. Loretta wasn’t rattled, startled or upset, in the slightest. When the doctor gave his diagnosis, she was watching her son, Anthony, playing in the corner with a box filled with toys. “I can still remember the look on his face”, Loretta smiles. “He was curious, excited and happy. And that’s when I realised, being autistic didn’t matter at all”.
Loretta admits that before Anthony was diagnosed, she, like many of us, knew very little about autism. “I only knew that it was an intellectual disability and that some have fixations or tendencies and many have difficulties with social skills; that was about all the knowledge I had”. She describes the whole process of getting a diagnosis as long and drawn out. When Anthony was under the age of two, he had age-appropriate language skills, social skills and was meeting all of his milestones as expected.
However, his progress began to decline after he turned two. “He started losing the language he once had and the words he did have, he would repeat them non-stop (echolalia) or use them in non-functional ways. He was withdrawing at home and daycare and was also becoming more aggressive towards everyone. He would line everything up from shoes to toys and his food. It was the small things he did like the way he could sit and stare at a spinning wheel forever and then change positions to look at it from different angles. He also had a really erratic sleeping pattern.”
Loretta and her very supportive husband Jonathan waited until Anthony was two and a half years old to raise their concerns with a doctor. By this point, she had already trawled through numerous websites and read many books about autism in children. Once Anthony was diagnosed officially, as parents, they had to make a decision about how to tell others about his condition.
Growing up in a very tight-knit family, Loretta knew that Anthony would be loved unconditionally by family and friends. She feared however, how Anthony would be perceived by others outside of her circle of family and friends. “I struggled with telling other people outside of our circle about Anthony’s diagnosis because I wanted them to see him for the individual he is first. I was also very protective of Anthony and I never wanted to put him in a situation where he would be treated or looked at differently. Although, as a parent of an autistic child I also want to create awareness and normalize autism in society so it’s very conflicting. I take it day by day. At this point I am more open about his diagnosis mostly because I want to show people that his autism is only another part of him – he is so much more”.
It is so important for autistic children to be recognized for who they are, not what they have. Anthony absolutely loves reading. He also knows how to work most electronics like a little genius, especially the trusty Ipad, and of course, like most young boys, he loves being outdoors, either running, swimming or climbing trees.
Yet, despite all the amazing gifts and talents that autistic children have to offer, they are often overlooked because of the lack of understanding around their condition. “Due to the invisible nature of autism i.e. there are no physical disabilities, sometimes I felt like I had to prove or justify to some people that my son’s diagnosis was correct. Many times when I told people they would say ‘oh but he looks so normal’ or ‘he’ll grow out of it’. At a recent event at Anthony’s school one parent asked me why Anthony was at special school when he wasn’t completely non-verbal. Before I found these sorts of reactions very frustrating but now I see it as a great opportunity to educate or to give a little insight into autism”.
As a parent there are, understandably, significant difficulties with raising an autistic child. Loretta was raised in Samoa and has grown up in a culture where physically disciplining children is culturally acceptable. Therein lies a cultural divide where what is considered as culturally appropriate, cannot be applied in an autistic context. As a mother, Loretta appreciates the importance of distinguishing ingrained cultural practices from what is suitable for her child, “I don’t think you can spank autism out of a child. Understanding the triggers and providing coping skills and improving communication skills is the key to avoiding meltdowns. Being a mother of an autistic child sometimes feels like you’re on a lonely roller-coaster with your child. It can be very hard juggling therapies, appointments, meltdowns, routines and finding a healthy balance can be challenging. It’s good to take a moment for yourself to recuperate and forget about your worries at home”.
Regardless of these difficulties, Loretta and her family feel unbelievably blessed, particularly with the strong bond that Anthony has with his three year old sister, Laurielle. “She is the de facto older sister, protector, teacher, cheerleader and helper. Many times we have seen her jump to her brother’s defence in the playground and even protect other kids from her brother’s outbursts. She can sense how her brother is feeling and will try to be his voice. They also have a typical sibling relationship where they tease each other, fight, laugh and play. It’s such an interesting relationship. We are sure this is a bond that will last forever. Another positive is that it has taught awareness within our own extended family and taught us all to be more compassionate and loving towards others living with difficulty”.
Loretta and her family are committed to caring for Anthony and preparing him in the best way that they can, for his future. “Naturally we have fears for Anthony’s future. We hope that we do a good job of providing him with all the tools he needs to become an independent and productive member of society. We also hope that we can help him to realise his dreams -whatever they may be”.
A heartfelt and extremely special thank you to Loretta and her family for sharing their story with us. It is our hope that in providing a platform to have discussions around widely stigmatised topics such as autism, we can learn and appreciate the amazing value that people with autism add to our world. Thank you, thank you, thank you!
If you would like to learn more about autism, you can look online, there are several resources available. Otherwise, Loretta has given us some tools/tips that might be helpful to know when you’re interacting with autistic children. Please note, Loretta is not posing as an expert for autism, she is simply speaking from her own experiences as Anthony’s mother:
· The number one thing to remember when interacting with autistic children is they express themselves much differently to most people. While they may not be giving eye contact it doesn’t mean they aren’t present in the moment. I know with Anthony sometimes he looks like he’s 100 miles away in his own world but once i start taking about him to someone he starts to act out.
· Anthony like many autists does not like to be touched without warning. It can be threatening to them.
· Do not yell or talk too loudly to them – it’s very jarring. For us it may be the same as having someone jump out in the dark yelling ‘BOO’.
· Sometimes being in an unfamiliar place around a lot of people can be overwhelming so remember it’s ok to let them retreat into a quiet space. It’s important to give them space when they need it. It all comes back to their sensory processing difficulties.
· Autistic children are the same as any other child – they want to be included and feel respected. Many may come from a background of being misunderstood, judged, bullied or rejected so it may take time for them to warm up to new people. Do not take it personally and remember it may take several attempts before they are comfortable around you. Remain patient and reassuring.
· When you’ve met one autistic child, you’ve met one autistic child. Every child is different so don’t assume they all have the same likes or dislikes. It pays to ask their parents if you’re unsure.
For other parents out there who either suspect or have recently found out that their child is autistic:
· People process such news very differently but remember that before you received the diagnosis you will have already been living with autism and dealing with it in your way. The diagnosis simply opens up doors to assistance for therapies, early intervention (which is critical), special schools etc.
· Surround yourself with positive people that share your own beliefs and want to support your family’s aspirations for your child.
· Never let your child withdraw from the real world. Make an effort to go out and experience different places and people. Take baby steps if necessary for example if he/she has a doctor’s appointment you might want to take them in for a visit to familiarise first or read a book about a doctor’s visit.
· You will get a bunch of advice that you never asked for from people who don’t have any real experience with autism so be prepared. I say thanks and then forget everything I just heard (laughs).
· Be a strong advocate for your child even when it means standing up to the experts. No one knows your child better than you. Sometimes I felt judged as a mother because I was so adamant that he had autism even before the diagnosis. I was even accused once of wanting my child to have autism. It’s a horrible feeling. My motherly intuition spoke very strongly to me though and I’m glad I trusted it.
· What you must remember foremost above everything else is that your child is so much more than just autistic – it is only one part of them.