Autism Awareness Day 2015. The start of a whole month of “light it up blue”, puzzle-piece memes on Facebook, and human interest stories at the end of the news about these “tragic” children. As the mother of two autistic* children, autism awareness is very important to me – but I want real autism awareness that leads to acceptance and support, not empty publicity leading to pity.
Autism is a neurodevelopmental condition identified by differences in communication and social interaction, as well as repetitive behaviours and intense interests. It is a spectrum condition, which means that even though all people diagnosed with autism share the characteristics listed above, the degree in which those characteristics are present varies. Diagnosis of a child is usually based on standardised assessments by multiple healthcare professionals (paediatrician, psychologist, occupational therapist, speech and language pathologist), as well as reports from education providers and input from parents.
Our youngest, “Abi”, was the first to be diagnosed. Abi is a very loveable little character. She has sparkling big brown eyes, and a cute cheeky smile. She quietly observes everything going on around her, she adores rough-housing with her Daddy (shrieking with glee!), family cuddles, and mutual teasing. It’s been wonderful to see her progress over the past couple of years.
Abi wasn’t a happy baby. She was frequently distressed for reasons we couldn’t figure out, she didn’t sleep well, her diet was poor, and she had bowel problems. We tried many of the usual parenting strategies, and then became creative, but to no avail. You see, you can take a child to bed, you can follow a predictable and well-attested bedtime routine- but you can’t make a child sleep. You can try to hide vegetables in accepted foods, you can substitute a similar food for a favourite food to expand the child’s repertoire – and some kids would rather starve than eat a new food. I’m not exaggerating.
The first therapist we saw was a Speech and Language Pathologist (SLP), as Abi had never had speech. After a while, the SLP referred us to an Occupational Therapist (OT), where we started seeing Abi settle and participate more. We learned that some of that distress she had experienced since babyhood was sensory overload, something that is very common with autistic people. Like many autistic people, she struggles to filter out unimportant sensory information, so places like shopping centres are notoriously difficult. Trolleys squeaking, registers beeping, fridges humming, a staff member sweeping in the bakery, multiple conversations all around, muzak interrupted by a jarring undecipherable voice over the loudspeaker, packets crinkling, flickering bright lights – all at the same time and registering at the same volume. I have seen a few simulations of what sensory overload is supposed to be like, and I wanted to curl into a ball, whimper and cover my ears. Some of the repetitive odd behaviours that autistic people engage in, is an effort to manage their sensory stimuli. One of the most valuable lessons we have learned is that behaviour is a form of communication. Our children don’t act out because they want to annoy us, often they aren’t able to communicate in any other way- and it’s our responsibility to ascertain what they are struggling with, and help them.
Sleeping and eating issues aren’t directly related to autism, in that they don’t form part of the diagnostic criteria, but it seems like a lot of autistic people have difficulties with them. We now know that some reasons for Abi’s self-restricted diet are oral sensory and motor issues- the sensory input she receives from her mouth is atypical, and she can’t always make the muscles in her mouth work the way they need to. Sensory issues are often listed as the biggest challenge that autistic adults face, and the latest version of the diagnostic criteria now includes it.
Learning about autism helped us to understand all of what we’d observed in Abi since birth- and gave us some new strategies to help her. We have continued with OT, as it has been of significant benefit to her, and it really wasn’t worth trying anything else until we had her sensory sensitivities under control. We’ve dabbled in speech therapy a few times, with limited success, but are feeling much more hopeful this time. Abi is showing great interest in learning to sign, and we are also trying to introduce vocabulary to her on her speech generating device, as she needs a more reliable, robust form of communication than the gestures she’s been using to date. Her school uses a variety of communication strategies in the classroom, and she enjoys the activities, stimulation, routine and people there. We have been working with an integrative doctor and a dietitian, who have recommended various supplements to ensure that Abi’s body has all the nutrients it needs. With their support, we trialled a gluten- and casein (dairy)-free diet, which has improved Abi’s sleep and bowel problems enormously.
Abi has become much calmer, and more engaging, now that she’s not feeling under constant sensory assault, her tummy isn’t hurting, and her body is receiving adequate nutrition and sleep. These issues are thankfully greatly diminished, but still present.
As we were learning about autism so that we could better support Abi, we realised that our older daughter, “Hannah”, was also autistic. She has always been a little quirky- nothing especially obvious, just not quite typical. She never completely understood social cues, even from toddlerhood. Her manner of speech is quite formal at times, and her accent is unusual. She becomes immersed in whatever she’s interested in, sometimes for years. With hindsight, we saw several sensory issues, that weren’t as extreme as Abi’s had been, but were still present.
Hannah also realised that she was autistic, and asked us to arrange assessment and diagnosis, which she received within a few months. She was relieved to know that there was a good reason why she was different, it wasn’t that she was just “weird”. She has enjoyed learning about how her brain works, and she is very proud of her neurology. She is logical, literal, loyal, truthful, has a very strong sense of justice, and she has a great memory and ability to concentrate on subjects that interest her. She doesn’t play mind games with people- she says what she means, and she has a very kind, generous and loving heart. We find her direct approach to conversations refreshing, her logical/literal statements amusing, and her many other upright character qualities contribute to her being a great daughter and friend.
While Abi presented with many of the stereotypical autistic traits and was non-verbal, it’s not unusual for very verbal girls like Hannah to reach adolescence before diagnosis. There are several reasons for this. One is that the diagnostic criteria seems to focus on male traits, since historically, the majority of people diagnosed with autism are male. Several prominent psychologists are currently formulating a list of female autistic traits, with the hope that verbal autistic girls will be identified earlier. Another reason for later diagnosis is the difference between how girls and boys relate to their peers. Girls tend to look out for one another in younger years, so an individual girl’s differences may not be noticed. It’s only as girls approach adolescence, and their interactions change from functional play to social and conversational- that the autistic girl’s differences become more apparent.
One of the problems with the width of the autism spectrum is that for people like Abi, who are non-verbal and need assistance to complete daily living tasks – what they CAN do is often not seen, or even looked for. Abi has a wonderful sense of humour, and enjoys teasing people. Daddy will ask for a kiss, so she will give him a quick glance and grin, then come over to give me a kiss, with another glance and grin to make sure he noticed. She can be very literal – like when I told her to “drink up!”, and she raised her cup high into the air, looking askance at why I would ask her to do something so odd. She is very deliberate and meticulous, and has fantastic attention to detail. She understands most of what is going on around her (we’ve learned to not discuss our upcoming Night-time Nail Ninja plans, even from afar – we now surreptitiously raise our eyebrows pointedly at each other and glance at her feet, otherwise she doesn’t sleep).
I have read many insightful and high-quality blogs and watched several Youtube clips produced by non-verbal people using speech generating devices, and it saddens me to hear how many of them are assumed to have an intellectual impairment simply because they don’t have verbal speech. Conversations with someone using a speech generating device are obviously slower than than conversations between two verbal people – but in our hectic world, taking time to really connect with someone is a good thing – verbal or not. We hope that by the time Abi is proficient in using her speech generating device, such prejudices and discrimination will be extinct.
For people like Hannah, the width of the spectrum produces an opposite problem to Abi’s – she seems so close to what-is-typically-considered-“normal” that her struggles are marginalised. Hannah doesn’t intuitively understand social cues. Like most people, she wants to be able to connect well socially, not embarrass herself, nor accidentally hurt anyone else’s feelings. Hannah is actively involved in setting her therapy goals, and one of her current goals is to improve her social interaction abilities, especially her conversational skills. With our OT, she has been learning how to start and finish conversations, and brainstorming some ideas for how to keep them going. She is learning how to glance in the approximate area of a person’s eyes, because like many people on the spectrum, she finds eye contact very confronting and difficult. Hannah has regular opportunities to practice the skills she’s learning, but because it isn’t intuitive to her, she finds the mental effort involved with social interactions to be exhausting.
In addition to her diagnosis of autism, Hannah has auditory processing disorder, which means that although her hearing is fine, her brain can be slower at piecing together what she’s heard, as she often misses a few words from each sentence. If we have her full attention before speaking to her, in a quiet environment, and don’t give too many instructions at once, she’s okay. Noisy environments and multiple instructions are not okay, and can cause her to quickly become flustered and frustrated. Hannah’s predominant sensory issues are auditory and tactile (she once referred to one of my dresses as “sensorially evil” and light touch makes her shudder).
The combination of these struggles unsurprisingly manifests as anxiety. When she becomes anxious, she manages it for as long as she is able to, but ultimately needs some time alone in a quiet environment, with an activity she finds calming- and no expectations of communication, because she’s not always capable of it at that time. The discussions can, and usually do, come later.
You may see Hannah as a slightly quirky kid. We see the enormous amount of effort she has invested in learning about social interactions, the tenacity to keep trying, the anxiety accompanying them and the exhaustion following them. Please understand that just by turning up again, and continuing to try, Hannah has already gone well beyond her 50% share of the interaction – yet she still will try to maintain her half of conversations.
I hope that you have found this article informative, and learned about many aspects of autism that you previously weren’t aware of. Awareness is great – it’s an important first step towards acceptance, which is my real goal. Acceptance requires action. Here are some suggestions:
- The only assumption you should make is that you don’t know the full story. Be kind, offer to help, and ask if you don’t understand.
- Think about how you think about autism. Do you:
- Believe the media sensationalism about tragic children locked into themselves?
(Our children are different, but they are not deficient. They are happy and loving. Autism is a different way of experiencing the world. Some of those experiences are harder, others are more fun. The tragedy is a media and society that is locked into an incorrect pattern of thinking!)
- Pity those poor parents whose children have difficulties (while quietly being thankful that such misfortune passed you by)?
(I can’t and don’t accept pity – because I love my children for the unique people they are. They struggle with some things that their peers don’t – but they also have some character traits and abilities that their peers don’t. I do, however, accept empathy- because it can be really hard to set up supports in a world that doesn’t accept or accommodate my children’s disabilities.)
- Laud those parents as superheroes, and “encourage” them by saying that there is no way you could do what they do?
(Sorry to disappoint, but no superheroes here! Just parents doing what any loving parents would do- whatever is necessary to help their kids.)
If so, now might be a really good time for a rethink!
- Believe the media sensationalism about tragic children locked into themselves?
- Learn about autism. Even better, learn about autism from autistic adults, who have great insights and life experience to share.
- Start to be mindful of the sensory environment. It’s such a huge issue to so many autistic people, that managing the sensory environment is a necessary accommodation. Non-autistic people acclimatise to their environment, and learn to filter out excess sensory noise (whether that’s white/background noise, flickering/fluorescent lights, perfumes/air freshener etc), but many autistic people can’t. If you can’t change the environment, ask the autistic person if they would be more comfortable elsewhere.
- Slow down! Whether it’s an auditory processing disorder, a speech generating device, or something else – it may take some time. And that’s okay.
After a while, you might find that you appreciate having the time to connect, the quieter sensory environment, forthright conversations, and a different way of seeing the world. We do.
* “Autistic” seems to be the preferred descriptor of many/most adults on the autism spectrum, as they consider autism to be an inherent and positive part of their identity, rather than something undesirable that can be kept separate (“person with autism”). I have therefore used their community’s preferred terminology, but no offence is intended to those who prefer alternative terminology.
Copyright LoveNLearning 2015. This article may not be copied without my permission, but links are welcome.