And The Family
report by Melissa Hart of Guelph for her grade 12 class,
What is Autism?
"Individuals and Families in a Diverse Society",
at Our Lady of Loures High School,
based on surveys kindly completed by mothers
whose children with autism who range in age from 4 to 36.
Autism is a spectrum disorder that affects social and
communication skills. It generally is apparent during the first three
life. Its effects are not the same in everyone. Autism knows no racial,
or social boundaries. Family income, lifestyle or educational levels do
affect the chance of autism’s occurring. It is four times more dominant
than girls. It is believed that as many as 1.5 million children and
adults in America have
Autism. Autism is not a disorder that can be “outgrown” but the
may lessen as the child develops.
on sameness; resistance to change
expressing needs; uses gestures or
pointing instead of words
Repeating words or
phrases in place of normal,
showing distress for reasons not
apparent to others
Prefers to be
alone; aloof manner
mixing with others
May not want to
cuddle or be cuddled
Little or no eye
- Unresponsive to
normal teaching methods
Sustained odd play
attachments to objects
over-sensitivity or under-sensitivity to
No real fears of
physical over-activity or extreme under-activity
Not responsive to verbal cues; acts as
although hearing tests in normal range.
children with autism, sensory integration problems are common. Their
be over or under active. Some children are particularly sensitive to
finding even the most ordinary daily noises painful, others may be
light and need to wear protective glasses and some may be sensitive to
and find that they are unable to wear certain fabrics or to keep their
and shoes on.
What Causes Autism?
Through brain scans, scientists have found that children
with autism have abnormalities in brain structure and function. The
that they have different shape and structure. There are many theories
causes autism but none have been completely proven. Some of the
genetics; problems during pregnancy or delivery as well as
factors such as viral infections, metabolic imbalances, and exposure to
environmental chemicals; and vaccines. Children are born with autism or
born with the potential to develop it. Bad parenting does not cause
children are not unruly kids who choose not to behave.
The Effects of Autism
on the Family
following is a collection of candid answers from five mothers of sons
autism. The children involved are 4 ½, 11, 13, 19 and 36. I
found this to be an
interesting range of ages.
All the children
at home. One exception is the oldest subject. He lived at home until he
In 1980, before Special Education was compulsory for Boards of
boy was placed in a residential school from age 12 to 21. He came home
weekends and holidays, so was home about half the time. Currently he
his own home where he tries to do all he can for himself and feels
His mother spends most of her time in his home providing support and
companionship and coordinating any other people who help him as support
Most of these families suspected
their child had a disability by age 2 but usually diagnoses took 2 to 3
years. Three out of the five families had other children with
as language difficulties; deafness; and math, reading, and writing
Adjustments for the Family
I asked the families
older children than the autistic child, if the family had to make major
adjustments when it became evident that the younger sibling was
families underwent drastic changes in family practices and behaviours.
in particular now found they were exhausted all the time and found it
function well. One mother commented that she loved to sing to her
had to stop because her son would scream and go into fits. Everything
have locks and be put away, nothing could be left out that could get
Some families had to change their diet. One mother said that her home
quality of relaxation that “home” implies. Attending appointments and
people coming to the house for evaluations were very time consuming and
Most of us would
agree that love
and support are the backbone of the family with communication next in
Communication varies drastically in autistic children. All the children
report communicate with their families, some easier than others. The 4
old and the 19 year old both have normal speech. The 11 year old does
speak. He uses sign language to a certain degree, plus gestures. He
what is said to him. The 13 year old does not communicate verbally but
picture exchange symbols to make requests. He also uses gestures and a
bit of sign language. He understands what is said to him. The 36 year
not spoken since the age of 4 or 5. He uses sign language, picture
symbols and facilitated communication (FC) which is most reliable for
involves a facilitator providing varying degrees of physical support,
as emotional and communicative support, to the user of a communication
aid.” Macalester.edu. 2004.
Awareness and Interaction
In all of the
children are very aware that their brother has autism. The siblings all
quality time with their brothers. However, behaviour and health
occasionally limit activities for some. In one family siblings find it
do things that he already has developed a level of competency. In
family where the autistic child is the youngest the children often play
together on the trampoline, swim in the pool, sing songs with him and
around the house. The older two sisters often babysit him on their own.
another family the twin sister spent quality time with her brother when
were young but found it more difficult in their pre-teen and early teen
but became good companions and friends later. His sister was a strong
and was proud of his efforts. She passed away when they were 27.
asked if the autistic child
attended school with his siblings only one out of the five had. During
difficult times in class the sibling was able to help out.
all these cases the mothers
found it difficult to spend equal time with both the neurotypical
the autistic child. The autistic children need so much more attention
All the families have both parents and they work very hard together to
time for everyone.
children often get help with outside services such as respite and home
services. Generally this extra attention to the autistic child does not
the other children in the house. In one family the siblings enjoy
getting to know their brother’s workers. They appreciate the time that
else watches and entertains him. Only one family said that they used to
services but currently found it too expensive and unaffordable.
In all of these families the
autistic child does do some household chores. Even the 4½ year
old clears his
dishes from the table and picks up his toys. The 11 year old
up spills that he has made but is usually not aware of messes that he
caused. This sometimes annoys his sisters when they are asked to clean
him. Yet they are very understanding that he is not capable of helping
household chores. The 13 year old empties and fills the dishwasher; he
the table in the past but with lots of supervision. The 19 year old
with many household chores. He can cook; do dishes, clean floors and
furniture. The 36 year old sets the table and has developed more
as an adult.
asked if the siblings are
comfortable having friends over to the house when their autistic
home, I got a mixture of answers. Most siblings had no problems when
brother was young. Those who experienced problems or embarrassments
usually in their teens. One because of some unusual behaviours, such as
suddenly disrobing, whining, and sometimes becoming aggressive or
boy is currently experiencing times when he is well and doesn’t behave
this at all but there seem to be a cycle so the other children in the
have to wait for those times to come around. One boy is very popular
sibling’s friends as he shares an excellent knowledge of computers and
electronics with them. When the oldest boy in this report was about 6
children were less tolerant of differences and disabilities and he was
by them making it uncomfortable for his sister to have friends over.
were much less understanding than they are today.
and Interaction of Others
this same question to the mothers about their friends’ comfort levels
autistic child, I also received an assortment of answers. Each case
mother answered that she wasn’t sure but had never received a negative
from her friends. Another answered that some friends were uneasy and
uncomfortable with the way he acts, as he is very loud and has a lot of
He can be overly friendly and sometimes will sit on people’s laps and
friends do not like it. In general, most of her friends take it in
don’t really interact with him. Another mother responded with “what
have no friends and even family don’t come around any more”. This child
aunt that has moved into the vicinity who has experience with these
children but because of health problems she needs to be careful. The
finds it nice to have her around, though it is not often. This mother
that her friends tend to be other people that she meets through
activities but they are more acquaintances than friends. Another mother
found that most of her friends were involved in autism support groups
Family outings can
be quite an
ordeal for these families. In one family, one person usually stays home
after the autistic boy or they get respite help when everyone needs to
as this boy gets very upset when we goes places he doesn’t like.
showing him pictures before hand helps. Another family always takes two
vehicles, that way when they see behavour that indicates that he is
down one parent can leave. If not, it is likely that the boy will have
full-blown tantrum, which is often accompanied by violence and
they see signs of heightened autism before going out they will choose
take him. Keeping a regular schedule of very well balanced meals and
water along with his supplements and enzymes are a must.
The foods are specialty items and he cannot
have the regular treat foods that children usually get on outings. This
requires carefully prepared and packaged food before the trip and
separating him from the rest of the children on the outing so that he
see them getting treats. Careful attention to this is imperative so
doesn’t feel badly about this. He is aware of what treats he likes and
when he sees the other children getting them. Another mother said that
avoid crowded situations where there are a lot of strangers. Their son
predictable surroundings where he has a safe place to go if he feels
However in 2003 when he was 18 he was able to travel by airplane to Texas
with the family with only his Gameboy and Walkman for safety. The mother of the oldest boy involved in this
report found family outings and holidays were very hard when the
little. But once the children were in their mid twenties they loved to
together with the family dog. He continues to love traveling though his
diet and sensory integration needs also means that they have to take a
stuff along. The youngest boy involved in this report has sensory
they can usually be dealt with at the time.
Support and Services
families agree whole-heartedly that there is not nearly enough support
services, from diagnosis to treatments to family supports made
everyone. Raising an autistic child calls for extraordinary and super
resources. Access to early diagnosis is essential. ABA
(Applied Behavior Analysis)/IBI (Intensive Behavioral Intervention) and
discrete trial therapy/education needs to be made available to every
person/family that wants it. Parents would also like to have access to
tests to investigate what is wrong with their child. Many autistic
cannot communicate how they feel or many do not even know what it feels
be well. Full physicals should be available regularly to check for
pain they are coping with. This would help to alleviate a lot of
issues can also be a major concern. Special services at home and
available but are very expensive and it can be hard to find good
families often go through long periods of time with no one available.
family says they only get two hours a week of home services. As
children need constant care and attention, two hours a week is hardly
Families often find that friends and family don’t understand and tend
away. With more knowledge given to explain autism the fear and
others could be lessened.
mothers had great ideas and opinions on services they would like to see
available. It was suggested by one mother that she would like to see a
the community with trained workers where the kids could go and play and
accepted. A camp geared only for autistic children was also suggested.
there has been discussion among political parties on a ten year plan to
that every family that lives with autism will have its own support
provides guidance as to how to get services from the system. There is a
in northern Ontario in
as support person may be provided. This kind of help everywhere would
great deal of difference. A great form of support that no longer exists
in the Guelph area in
matched “natural” families who had children with special needs with
families (in essence, volunteers that wanted to understand and be
They visited each other and built up friendships until the host family
comfortable having the special child visit by himself overnight or for
weekend. It was wonderful as a humane and natural form of respite and
increased general community understanding of what it is like to live
the mothers had great advice to give others, particularly those just
out that their child is autistic.
remember that autism is just a label and it is not who the child is.
every bit of help you can get but be realistic. Not every therapy helps
support immediately and look into all aspects of therapies that you
- Do not
- Get ABA
therapy right away if you can regardless of the costs – it will pay off
- Make sure
you get complete medical and nutritional profiles done on your child.
everything. Be carefully what you sign (particularly institutions such
make you child your life’s work.
- Have fun
in whatever way they are able to.
- Work hard
with your child but have some fun along the way.
become obsessed in trying to make your child better. They will progress
far they are meant to.
rush your child or yourself and above all do not blame your child or
feel like a failure. We can only give what we can.
other parents. Find out how they handle things.
- Keep in
close contact with your case manager.
- Stand up
for yourself and your child.
at your library and see what others have found that helps.
- Participate in the
research that is going on.
- Love and
believe in the child beneath the autism.
- Find ways
for the child to express himself/herself in whatever forms it takes.
- Find and
cherish true friends for the child with special needs and for the
- Plan time
with your other kids. Set aside a date even if it is with one parent
- Take care
affects families enormously. They are challenged physically,
financially. Everyday things that most of us take for granted have to
carefully planned and executed. It affects the social patterns of the
and friends. More support through
government agencies and community services are necessary. Better
through education for friends and families should be more available.
a life-long disorder and help needs to be available and affordable from
childhood to old age. Every human life is something to cherish.