The first thing that stuck me about David was his beautiful eyes framed with incredibly long lashes (every girl's dream). After that first glimpse I severely saw his eyes again as he bounded and jumped around his home playing with a bright colored ball he held tight by the elastic hanging from it, he was obviously happy and took little notice of us, his Mum's visitors. We had been invited over for afternoon tea but David did not interact with us at all.
Once Mary sat with us and we were enjoying our tea (Mary was up and down attending to David), I asked her some questions about raising a child with autism. This is their story.
Like the majority of children with an autism spectrum disorder, David has impaired communication- but it was not always that way. While many children with autism do not develop language as babies, Mary recalls: “David's language was developing quite normally.
David was initially diagnosed with 'Semantic Pragmatic Disorder' because his language appeared to be developing quite normally. With the initial diagnosis of SPD, after taking the 'Griffiths Test' *, David was diagnosed with autism just after his third birthday.
Mary vividly recalls the pediatrician's comment: “David has autism and he will have it for life”. For Mary, it felt like a death sentence. What followed was months of darkness – despair, shock and disbelief. In a cruel twist of fate, by the time David was four, he had lost all ability to communicate verbally. David now only makes noises, a 'happy type squeal' to indicate happiness and a type of whining sound when he is unhappy or upset. He is like a toddler who never grow up, in need of constant supervision against the dangers of the world.
Mary and Geoff are now resigned to the fact that David's condition is for life and they will need to care for him now and in the future.
* Griffiths Test – a measurement of the rate of development from birth to 2 years and up to 8 years.
David's parents did what parents do when faced with a diagnosis of autism. They chashed every rabbit down every hole in search of a cure or miracle treatment, all of which cost money and may not be covered by medical insurance.
David received speech therapy, although this was basically play; He was also put on a casein and gluten-free diet (which had no effect), had chiropractic manipulation, 'Connect Therapy' which is physiotherapy based, and an occupational therapist and speech therapist from 'Giant Steps' came to his home to teach life skills such as feeding and toileting. At age 9 David is still not toilet trained and requires assistance with his personal care. Treatments for David had little success. Typical of such a spectrum disorder, there are success stories of varying degrees, but for David it has been a fruitless road so far.
David went to a special education format two mornings per week until he started attending the Aspect Vern Barnett school. There are 5 children in David's class and most of the children at the school are boys. It is well known that Autism disorders affect boys more than girls.
To be able to attend Aspect's Vern Barnett School 5 days per week, David is picked up by a mini bus at 7.45 – 8.00am and returns between 3.30 – 4.00pm. David attends this school, which is exclusively for children with autism, is run by Aspect (Autism Spectrum Australia) and is about 50 minutes from his home. David really enjoys attending school as it gives him a routine, something which is important to him and the family as a whole. Mary needs to rush home on the days she works to be there by 3.30pm when David arrives. It is imperative that David is not left alone at any time.
Mary's work takes her away from home 2 days per week (at a local school), as a qualified teacher / librarian with a Graduate Certificate in Professional Studies (ASD) which qualifies her to teach children with autism.
School holidays present even more issues as vacation care is not organized by the Vern Barnett school. There are government funded reply centers available but the amount of care a family is allocated depends on the particular government funding available in that year. Most school holidays, Mary is allocated 2-4 days vacation care per week and David loves attending, again, it is a good routine for him and he loves the stimulation. During those days Mary will organize things for Mitchell (aged 6) to do, such as invite friends over, or they spend time together without David. Mary is also able to attend to school duties for one or two days during the holidays.
In the few hours we were in David's home he only sat down for a few minutes to eat some afternoon tea. The rest of the time David just jumped and skipped about everywhere while Mary kept a close watch on what he was doing and he occasionally came to the table to eat more food. Apart from one instance of climbing on furniture David was well behaved and safe during our time there.
With his constant moving and jumping around, we could see how exhausting looking after David is, and he himself must get tired, so he is put to bed at 7pm every night and seems quite happy with this routine. He may not go to bed right away but he stays in his room. The family needs time out and it's also good for Mitchell (his younger sibling) to have some quiet time.
David requires constant monitoring by Mary and Geoff as he will wander into the kitchen and eat all day if allowed. When he is bored he has been known to climb on the kitchen benches or eat toothpaste, soap or other inedible items, so you really have to know where he is at all times.
David has little understanding of his environment, his social world or the risks that other children his age are aware of. Walking on a busy street can be life-threatening for David if he were unsupervised. Basically, Mary or Geoff must always watch David when they are at home and hold his hand when out – it is not hard to imagine how physically and mentally exhausting it can all become and he is still only 9!
Mary is David's primary carer and unless someone is used to an autistic child it is difficult to know how to look after them, so help from family and friends is limited. However Geoff's mother will babysit for both boys if there is a social function to attend. Unfortunately, Grandma is getting older with her own health issues so she is not asked to babysit too often.
David is lucky to be able to attend a reply service at Croydon (a suburb not far from home). The reply includes vacation care and flexible in-house reply. This service allows Mary and Geoff to go out with friends or as a couple once a month.
Recently, David has been approved to attend a reply house for overnight stays – usually weekends. At present they receive 2 nights per month (Friday and Saturday). This provides the family with a great opportunity to spend quality time with their youngest son, Mitchell, and do activities not possible with David. For example, in the school holidays Mary, Geoff and Mitchell were able to camp overnight at Cockatoo Island (in Sydney Harbor) with family friends – something they would never have been able to do with David.
David is constantly on the move with something in his hands, usually a ball or tassel, he moves all day. He has a high tolerance to pain. He will often bend down and hold his head so Mary assumes this means he has a headache. Any medicine has to be crushed into some cordial (his favorite drink) and this is given to sedate David when attending the dentist, hairdresser, specialist or pediatric ophthalmologist (David wears glasses). The fear of visits to dentists and doctors is so severe that David needs to be given a general anesthetic for dental and eye examinations.
David is classified as low registration which means he needs a lot of sensory input to become excited, thankfully this makes for a placid personality but he requires medication to allow him to sit for periods of time. A simple haircut becomes a nightmare without it.
As routine is extremely important to David and any change in routine becoming upsetting, school holidays can be difficult without he is kept constantly busy by attending vacation care, going out or going on holidays. As food is his main motivation, going out for dinner or out to cafes with the family is good for David. As long as there is food around he will sit for a short amount of time. In addition to looking out for David's safety, another issue Mary has taking David out is how people react to him and having to explain his disability constantly to others.
Mary explains that living with a child with autism is like being on a roller coaster. There are highs and lows. The unpredictability of his behavior is exhausting and often limits the family's social life. An escape plan always needs to be thought of, and ways to calm down David if he becomes upset. The daily stress of looking after David takes its toll and there is always the fear of the future that never really leaves you – who will look after David when his parents are gone?
Mary says “Even though looking after David is challenging and unpredictable, he has given us so much joy. He has allowed us to let go of false self-images and beneficial goals and desires. has fostered compassion, depth and understanding. We are better people because of David. ”
There are many families just like Mary and Geoff's who struggle every day doing what is needed to try and have a reliably normal life, they have mixed emotions about their circumstances but most do a fantastic job of just getting on with it because nothing will change if you complain or become depressed. That does not help anyone. Mary and her family do their utmost to ensure David is happy and safe. From the time I have known Mary she has always been strong, energetic and confident of a positive future, which is a credit to her.
Mary says “I would just be so happy if David was toilet trained and could speak a few words to tell me what he wanted”. Life for this family is not very easy and they deal with things one day at a time.
More funding is needed to research the causes of autism and its related disorders. As well as funding for research, the families affected by this disorder need assistance, care and understanding, so extra funding and more resources are needed for them as well. Families like Mary's never know how much reply hours that they will receive each year until the Government allocates funds to care providers. The care provider must then divide this up among all the families registered to their service. So reply hours will vary from year to year. This adds even more difficulties to daily life as the amount of reply hours changes each year, sometimes disabling routines, which are so important to children with autism.
For further information contact Autism Spectrum Australia or the local ASD organization in your country.