A Day in a Life with Autism
Little Clemmie: defying the odds
Fiona and Alex had settled into the normal life of young parents in London. They had established their home and careers, juggling those demands with caring for a child and growing another. While typically hectic, their life was fundamentally predictable. When little Clementine was born, her perfect health gave them no reason to fear this would change. She was hitting her developmental milestones and was an easy, cheery baby.
‘In hindsight,’ says Fiona, ‘you can’t help but search for clues that something was about to hit you.’
When Clemmie was five and a half months old, she started having seizures. She was diagnosed with infantile spasms, also known as catastrophic childhood epilepsy because of the potential lifelong damage to the child’s brain.
Fiona and Alex began the extended process of attempting varying treatments recommended by doctors. They tried steroids, the first line of attack for halting infantile spasms. When those didn’t work, they embarked on a long and discouraging journey of anticonvulsants. Her doctors turned pessimistic, warning Fiona and Alex that Clemmie’s prognosis was bleak.
Throughout this process, Fiona’s godfather Geoffrey Klug—former Director of Neurosurgery at Melbourne’s Royal Children’s Hospital (RCH)—stayed in touch with her and closely followed Clemmie’s situation. He consulted with Dr Simon Harvey, Consultant Neurologist and Director of the RCH’s Children’s Epilepsy Program, and advised the family seek a second opinion from Dr Harvey and Neurosurgeon Wirginia Maixner. When Fiona brought Clemmie to the RCH, she was quickly diagnosed with cortical dysplasia and Dr Harvey recommended she have urgent neurosurgery by Dr Maixner.
Cortical dysplasia is a structural abnormality that occurs in the brain as it develops in utero. It usually causes the embryo to become inviable and naturally terminate. In cases where the child survives, the theory is that at approximately six months old, they hit a developmental threshold that triggers seizures. To have the highest chance for a best outcome, experts recommend surgical intervention as soon as possible, a life-threatening risk that doesn’t guarantee results.
Alex and Fiona immediately packed up their lives in London and moved to Melbourne for Clemmie’s operation and ongoing care. By this point, Clemmie was 16 months old, seizing up to 100 times a day, and essentially unresponsive to anyone or anything around her. Even with surgery, which, in Clemmie’s case, would involve disconnecting three of the four lobes in her left hemisphere—the lobes that cover speech, language, memory, emotion and vision—her most favourable prognosis was uncertain. But, hopefully, it would at least stop her seizures and any further damage to her brain.
Clemmie survived the surgery. What’s more, it not only halted her seizures entirely, it stopped them without requiring any anti-convulsant assistance. Alex and Fiona’s fundamental hope was fulfilled.
But otherwise, Clemmie’s recovery was slow. She had limited emotional range, continued to be detached and didn’t like to make eye contact. While she started to crawl, she developed behavioural challenges such as head banging and constantly tapping, and she still didn’t speak. Only Clemmie’s older brother, Hugo, was able to reach her, willing smiles from her despite her condition. She was diagnosed with global developmental delay with signs of autism.
With the RCH surgical team’s expertise delivered, Fiona and Alex were now to navigate the world of intervention. As they began exploring, they discovered that existing care options focused much more on giving them strategies for coping with Clemmie instead of working directly with her to stimulate her development. With government funding, she received 45 minutes of speech therapy a fortnight, astoundingly meagre assistance given her magnitude of delay.
It was during this time that Alex and Fiona met up with one of Alex’s cousins and his wife, who happened to be aware of L4Life. They encouraged them to meet L4Life Chair Mary Muirhead and consider ABA. Fiona met Mary and L4Life Clinical Consultant and Business Manager, Pam Roy.
Facing few options, Alex and Fiona opened to the hope of that, through ABA therapy’s methodical skill-building from scratch, Clemmie could improve. For L4Life, Clemmie’s situation was a new frontier; the nature of her autism was unlike anything that L4Life clinicians had encountered and they couldn’t be certain they could help her. The best everyone could do was try.
During her first meeting with Clemmie in December 2014, L4Life Clinical Director Emma Miller sat with her, assessed her abilities and put together a basic, play-based ABA program. As with all L4Life children, she focused on ensuring that Clemmie’s program addressed her specific needs and capability at the time. As these changed, she adjusted her program accordingly.
The initial goals for Clemmie were attention and gross motor development. Because Clemmie was not connecting with anyone around her, her therapy focused on attention-building through songs, toy play and physical play. As her physical development was crucial, her therapy also focused on stamina, hand-eye coordination, then moved to balance and walking.
As Clemmie learned to pay attention, her therapy progressed to working on her language development. It focused first on her understanding of language. As this developed, it shifted to imitation, including imitation of sounds, then words.
Throughout the process, Clemmie required flexibility from her team to vary the length and frequency of her therapy sessions, including break times, while she slowly increased her stamina.
In the 18 months since L4Life started working with Clemmie, her progress has been remarkable—more than anyone dared hope. At three and a half years old, Clemmie is now speaking five to six-word sentences, imitating and expressing abstract thoughts.
Says Fiona, ‘I’m truly amazed each day when I hear her talking and connecting with the world around her.’
She started walking last September and has begun climbing, running and jumping. She is incredibly social and spontaneously greets people when they arrive, notices when someone is missing and requests them. When not in a session, she constantly seeks out interaction with her family. She continues to cherish Hugo in particular, and her parents believe that his constant, patient attention and love have played an important role in his sister’s recovery.
Clemmie genuinely enjoys learning. In addition to all of her attention, gross motor and communication gains, she has learned colours and is developing concepts such as big/little and under/on top. Through her ABA program she has also become toilet trained and is becoming more independent in her play.
As Clemmie’s ability to learn has improved, she has become less frustrated. Her therapist team is moving her sessions beyond home to parks, supermarkets and the library, encouraging her to experience and absorb the broader world.
The work for the many people around Clemmie isn’t done. But her improvements inspire each of them with the belief in extraordinary possibilities; possibilities resulting from extraordinary wonders such as modern medicine, childhood brain plasticity, the power of behavioural intervention, family determination … and love.
Two Days in the Life of Lucy
Day 1: Lucy at two years old
It’s lunchtime and I pop Lucy on my knee at the kitchen table with the intention of feeding her some soup. I use my free arm to wrap around hers to stop her from pushing the food away. I attempt to pour some nutritional value down her throat. She’s kicking and screaming. I’m crying, and we both end up wearing it all.
Food is our biggest battle. She’ll willingly eat only chips, but they have to be McDonalds fries or Smith’s Plain Crinkle Cut Chips straight from the packet. When I attempt to serve them to her in a bowl instead of the packet, she throws them on the floor and runs away shrieking.
I pop Lucy in front of the TV and put Dora the Explorer on. No point expecting her to watch anything else. It’s Dora or nothing. I know every word of the Pirate Adventure episode. The whole family does. It’s on high rotation all day every day.
With Lucy entranced by Dora, there’s an opportunity for me to have a cup of tea. Until I spy a finger smear on the wall and my heart sinks. She didn’t use paint.
Nappy changes are a logistical challenge. She’s too big for the change table, but refuses to keep still for the exercise.
Lucy started talking at 18 months. Now there are no words, just nonsensical babble. I didn’t even know that regression was a thing. I thought that she would continue to develop new skills, not lose them. Why my girl? How could this happen? Why don’t the medical professionals have any answers? We’re awaiting an appointment with another paediatrician. I’ve already given up on two others. They just take an exorbitant fee and spend half the time asking ME what works. Me? Where are the experts? When do our knights in shining armour arrive?
Lucy’s sister, Abbey, is a couple of years older than her. Before Lucy regressed, they had a special bond. They would play together and smother each other with hugs. Now Lucy wants nothing to do with anybody. She doesn’t want to touch or be touched. How do I explain to Abbey that Lucy doesn’t hate her? How do I help her deal with that loss when I’m grieving myself?
Friends with pre-schoolers agonise over which school to send their child to. There’s plenty of choice around here. They weigh up the pros and cons of sending their children to the Catholic school, the Steiner school, the school with the good sports grounds or the small class sizes. I wonder if a mainstream school will even be a choice for us.
Lucy’s birthday is approaching. Well-meaning friends and family ask what she would like for a gift. What can they buy her? I don’t know. She doesn’t have any interests or play skills that are apparent to me. The question feels like another dagger in my heart.
It’s time to pick the older kids up from school. I grip Lucy’s hand tightly and have a harness strapped to her as back up. In a split second she would run on to the road if I let go. Other parents give me strange looks because of the harness. Abbey asks if we can play in the playground while we wait for the kids, but I say no (again) because I’m worried Lucy might run off, or have a meltdown, or both. Abbey understands. It’s not fair. She’s a child who wants five minutes on the monkey bars, and I can’t even give her that.
All four kids are home from school and it’s time for me to prepare dinner. I brace myself for another battle with Lucy over another bowl of soup.
Then I spy that one of the older kids has left the front door open.
I run down the street calling her name, which is futile because she doesn’t answer to her name. Then my oldest comes to tell me she was inside all along. I’m always on high alert, keeping constant surveillance of the front door. She let herself out not long ago. I had no idea she was gone. She just made a run for the main road and the first I knew of it was when somebody arrived at my front door having carried her up the hill. Her rescuer asked her where she lived, but Lucy can’t speak, so this kind soul just kept knocking on doors until she found us.
Because Lucy doesn’t use, or even understand, much language, I have to anticipate and guess her needs. Is she hungry, thirsty, tired? Does she have a tummy ache or are her shoes too tight? Does she need a jumper or does she want to play outside? It’s all guesswork. And when I don’t understand, she becomes incredibly frustrated.
With dinner done and dusted, it’s bath time. It has taken months for Lucy to willingly get back in a bath after the time I added some bubble bath mixture. The bubbles terrified her. Finally, she’s learned to trust the bath again. So much so that when I turn my back while running the bath, Lucy has hopped in by herself—fully clothed with her shoes on.
Day 2: Lucy at 5 years old (after receiving three years of ABA therapy)
It’s early morning—I’m busy getting the family ready for the day ahead. I hear the flush of the toilet and the running of the tap. Lucy has gone to the toilet and is washing her hands. Breaking this process down into small steps and constantly reinforcing each one took many months, but she has learned this valuable life skill and can do it without my assistance.
I tell Lucy we’re going to kinder and to bring me her bag. She understands me, and arrives at the front door, chirpy with bag ready to go, her stomach full from a healthy banana smoothie she fed herself! Food tolerance is working. Receptive language is improving. I couldn’t be prouder.
When I pick Lucy up from kinder the teacher tells me that she loved playing with the musical keyboard. She said that Lucy “just popped on a set of headphones” so she could listen to herself play. I smile to myself knowing the simple job of popping on headphones was only possible because we’d just spent two months of intensive headphone tolerance in ABA. Lucy didn’t automatically cope with wearing headphones, playing in the sand pit, swinging on a swing or wearing a hat. None of this would have been possible without a long involved tolerance program. Without ABA, Lucy also wouldn’t follow basic instructions, play with puzzles, cut, paste or colour—wonderful and essential skills that children need to be ready for school.
We arrive home at lunchtime. Lucy smiles as she watches me put soup in the microwave. The same soup we used to wear. She devours the lot and goes outside to jump on the trampoline.
A therapist arrives for an afternoon session; Lucy’s therapists are her knights in shining armour. She is currently learning to match letters of the alphabet, identify locations, follow a visual schedule and play for prolonged periods. None of this seemed possible when she was two years old. None of this would have been possible without ABA.
Another session is over and it’s time to relax in front of the TV. Dora and her pirate adventures still get a good run but Dora has been joined by Diego, Justine Clarke and the gang from Playschool. Introducing Lucy to new interests has also been part of her ABA program.
The older children are home from school. Above the din I hear “I want grapes”. It’s Lucy’s iPad—Lucy is learning to communicate with a speech-generating app. Now she can tell me what she’d like to eat or that she’d like to go outside or watch TV. Being able to communicate her needs has been so empowering for her, and for us.