INTERVIEW WITH JOSIE
Josie Santomauro is an Australian author of children's books focusing
on Autism Spectrum Disorders. In this interview, she discusses
Autism and Asperger's syndrome in Australia and her own experiences
as a mother.
Michael and I live in what the Australians call
the Sunshine State of Australia – tropical paradise, beautiful one
day, perfect the next! We live with our son Damian (10 years) who
has Asperger Syndrome, and his sister Chiara (8 years). Damian was
diagnosed five years ago, where I forgot to go through the grieving
process and embarked on the trail of acquiring as much knowledge
as I could about this syndrome that would affect all of us in different
How many people with autism/asperger are there in Australia?
Australia’s current population is approximately
18 million. Using the latest census data (1996) the Autism Council
of Australia has considered all available information and states
that one in 500 of our population will have an Autism Spectrum Disorder
severe enough to require ongoing specialist support which equals
Other figures show an approximately total of 110 000 with Autism
of which 74 000 have Asperger Syndrome (obviously mild to severe
cases). Take into consideration that these are the diagnosed numbers,
there are most probably the same amount undiagnosed in the country.
Latest figures for Asperger Syndrome are 1 in 300.
What sorts of supports are there from government
or the medical system?
Types of government and medical support varies
from parents receiving a disability pension and transport assistance
to schools receiving funds for special teacher assistants. Our state
has formed a Disability Service hoping to offer more support to
the parent with a challenging child, or assisting the adult wanting
to become independent. But these packages are in preliminary stages.
Supports vary from state to state in our country. There isn’t consistency;
some states are very proactive and some very uninformed. I think
it depends on the individuals in power, some are aware, most are
not. There is still a long road for educating the people at the
What sorts of supports are there from schools?
Once again this varies from state to state. If
a child has a medical (pediatrician) diagnosis they will receive
more support than a child whom is diagnosed by a psychologist. This
support is offered by the government in the way of aide time to
either assist the teacher in preparation time, or having an aide
in the classroom assisting the child, or releasing the teacher for
inservicing or meetings. Children are ascertained a level from one
to six (six being the highest need). Children who on levels five
or six, require an IEP (Individual Evaluation Plan) written by the
class teacher together with a support team. An example is a child
on level six who in 1997 & 1998 received 25 hours aide-time
per week, then in 1999 there was a change in Government and this
child automatically lost 17 hours.
What happens to people with Asperger Syndrome
if they are poor? If they come from well-off families?
If you are on the lowest end of the socioeconomic
scale then yes you are disadvantaged. You can’t access the professionals
as easier and swiftly as somebody with the dollars. Ironically a
family on the lower scale won’t be able to afford the entry fees
to the government funded unit for children with Autism, unless under
special circumstances. Waiting lists at our public hospitals are
lengthy, so of course these families miss out on early intervention,
a bit scary if a child is severely depressed. A child who is born
into a wealthy family can access a multitude of services, speech
therapy, occupational therapy, counseling, music lessons, social
skill classes, etc, on a weekly basis.
How did you learn Damian had Asperger’s?
How easy is it to get a diagnosis?
Damian’s preschool teacher picked up on Damian’s
speech and social behavior problems – he was five years of age.
This led us on the ‘diagnosis’ trail. First stop was a speech therapist
who said he had more than just ‘speech problems’. Second stop at
the pediatrician's, who thought he had mild ADD. She then investigated
further and he was diagnosed by a team of specialists who came up
with Asperger Syndrome. After accepting this diagnosis, we then
went to a psychologist for further treatment where we were then
told, ‘No, he hasn’t got Asperger Syndrome’. Frustration set in.
I wanted to stay with the first diagnosis, but my husband wanted
to accept the second diagnosis, so we agreed to try for the third
opinion. Bingo! A diagnosis of ‘mild’ Asperger Syndrome was obtained.
Back in 1995 it wasn’t as easy to obtain a diagnosis of Asperger’s
syndrome, as it wasn’t very well known. Even the doctors didn’t
have access to information that they could hand out to us that was
‘parent-friendly’. But in the year 2000, there is a multitude of
professionals who are more aware and keep an eye out for children
who display characteristics of Asperger’s syndrome. One of our local
hospitals has a team set up purely for diagnosis of children with
a possible Autism Spectrum Disorder.
What sort of help do you get from friends/family?
Basically none. I have friends who offer their
‘shoulders’ for me to cry on, but when it comes to family it is
a hard situation. Some family members are still in denial and won’t
accept that there is anything wrong with Damian, and so jeopardize
any strategies. The only answer here is what is the best thing for
Damian, which is consistency, so we have decided to distance ourselves
from those family members. It is very confusing for the child to
have parents who put strategies into place, and then when you turn
your back to have family telling the child ‘Oh, Mummy’s silly, don’t
worry about it, you do what you want!’
What is it like raising a child with Asperger’s?
It’s not easy raising a child with Asperger Syndrome.
Two steps forward, one step back is how I can best describe life
with our child. But then I can’t imagine life any other way now.
It makes you appreciate people’s differences.
What was the most difficult thing to deal with?
The most difficult thing to deal with is when
I see his pain and suffering, when he hasn’t understood something
and is feeling humiliated, or his frustration about life leads to
his anxiety and depression.
What are people's (society's) attitudes towards the
mentally disabled? Do you think they're changing?
Basically people are scared of something they
don’t understand. Ignorance breeds fear. The majority of people
in this country still cock their head to the side when you mention
‘Asperger Syndrome’! I do think society is changing, with more information
and training, people are becoming more understanding of people with
Asperger Syndrome. Knowledge is power.
How would you describe your child's life?
I can’t say he has an easy life. He is an anxious
child, and so each day seems to have its individual hurdles. He
tries so hard to appear ‘normal’ at school that by late afternoon
he is usually overly exhausted, mentally and physically. The weekends
and holidays are his respite. He absolutely relishes these times
and wants to stay at home most of the time, safe within his environment.
What will happen to your child after you're gone?
I’m not too worried about when he is an adult,
because of the early intervention and independence ‘training’ that
he has been surrounded with. He is clever enough to work out what
in life is easiest for him to endure, and I predict he will live
alone, have a few friends, go to the same shops, and virtually live
an independent life with his little quirks but he will be happy.
But if he ever falls down, there are many adult support systems
set up for him to access.
I am mostly concerned if I pass away within the next 10 years, I
know my husband will look after him, but nobody knows a child like
their mother! My role on this earth will not be complete until Damian
has reached well into his teen years.
Are parents organized or organizing in Australia? If so,
how long has your Asperger Syndrome society been set up?
Yes, parents are the best advocates for these
children. There are many support groups popping up all over Australia.
Within our State, we have an impressive support group that commenced
back in 1995 with seven parents. Now, five years later, the support
group has become a network of seven branches with a total of 415
How do you get together? What do you do?
These wonderful committees organize monthly meetings
with a guest speaker, parent morning teas, seminars, family outings,
family camps, fathers days, mother camp, and sibling group get-togethers.
What was it like meeting your first parent who
also has a child with Asperger Syndrome?
Meeting other parents with children who have Asperger
syndrome is like meeting people who have a similar cultural background
to you. They understood our language, our needs, our emotional roller
coaster rides, our difficulties within society and most importantly
they understood our children.
What would you change, if you could, for people
living with Asperger syndrome in Australia?
The key word here is ‘change’. There are so many
things that need to be changed, but primarily people’s attitudes.
Without knowledge and awareness of Asperger syndrome, society cannot
and will not change to suit the needs of these children. We need
a spokesperson, a celebrity who will stand up and say ‘Hey, if I
can understand Autism/Asperger, then it’s okay’. Unfortunately people
are like sheep, we follow, and hopefully society would follow the
inspirational words of our celebrity spokesperson. Any volunteers???
Copyright 2004. This interview is reproduced
with the author's permission. You are encouraged to visit her site
to view the resources she is developing for other parents.
Click here for the full range of Asperger's and autism fact sheets and personal stories