MY CHILD'S BEEN DIAGNOSED
AS HAVING AUTISM - WHAT DO I DO NOW?
Parents typically go through a wide range of emotions
when their child has been given a diagnosis
syndrome or autism.
Grief and loss are common emotions as parents invariably picture
wonderful things for their child's future. The diagnosis will entail
readjusting these expectations and this can be a painful process.
Along with this may well be fears for the future. As developmental
disorders, it is hard to predict what levels of independence and
life skills an autistic child will develop by adulthood.
Dealing with the diagnosis
Some parents may experience denial of the diagnosis.
This can be a normal reaction to major shock and denying the diagnosis
may be a protective mechanism until the shock has worn off. On the
other hand, there can be relief at finding a reason for delays in
a child's development, and finding practical strategies to help
their child. The most common reactions reported by parents include
devastation, helplessness, surprise or relief that inexplicable
behavior is finally understood (National Autistic Society 2006c).
Everyone reacts to major life events in different
ways, and parents should be understanding toward each other if their
reactions differ widely. Sometimes grandparents can make the situation
difficult for parents, by not accepting the diagnosis. They may
feel that more discipline is needed, or even that it is bad parenting.
There are clear steps that can help parents deal
with a diagnosis:
• Begin steps for assessment
• Make sure the professional who made the diagnosis
fully explains your options
• Learn about behavior
strategies and strategies to support communication
• Join a parents support group.
Impact on the family system
The shock of an autism or Asperger's syndrome
diagnosis can be likened to throwing a pebble into a pond. The ripples
most affect the immediate family, then extended family, friends,
school and the community. Siblings, grandparents and others who
are close to the family will all have their different reactions.
Provide everyone with information on the disorder and encourage
discussion on the issue.
Getting informed about autism or Asperger's syndrome
Parents will understandably want to learn as much
information as possible and look for appropriate therapies and interventions
to help their child. There are many good books available and this
site provides a comprehensive overview of the many issues surrounding
Autism Spectrum Disorders. It can be very daunting at first but
the overall picture will fall into place eventually.
It is completely understandable that parents would
hope for a simple cause
of Autism Spectrum Disorders, and a simple cure. However,
these are life long disorders - genetic component has been established
as a cause, and some claim that environmental causes might also
be involved, leading to much debate about diets and alternative
therapies. Be open to new approaches but also have a healthy skepticism
in your research. Look for evidence-based
treatments where possible. Remember that early intervention
can make a big difference in minimizing delays in a child's development.
Join your local autism association and see if
they have a parents support group. A support group can be a great
source of support, encouragement, information and inspiration. If
there isn't one in your area, you can speak to your autism association
about starting one yourself. Even an informal morning tea every
month can create a support group that takes minimal effort to run.
If no groups exist in your area, explore the on
line forums and blogs that many parents visit.
early intervention for your child following diagnosis
Autism and Asperger's syndrome lead to delays
in your child's development. Early
interventions seek to minimize these delays to achieve as normal
a life as possible for your child. Early intervention is important
to prevent your child dropping further behind in reaching developmental
milestones. Talk with your autism association about options in your
Parents can feel they are letting their child
down if they can't afford the most expensive therapies available,
but remember the most important therapy usually takes place in your
home. Learn as much as you can about the interventions you adopt,
and apply these principles in the home environment. This consistency
along with therapies outside the home will benefit your child greatly.
To date, the most rigorously tested and effective
interventions are the behavioral ones such as:
Positive Behavior Support.
Developmental interventions are proving effective
as more research is conducted. Examples of these include:
Integration Therapy is a proven intervention for the problems
problems with touch, smell, hearing, taste and sight experienced
by children on the autism spectrum. Occupational therapists provide
this therapy, which also assists with difficulties in movement,
coordination and sensing where one's body is in a given space.
Alternative and biomedical therapies
Unfortunately, research moves slowly and there
are other interventions that haven't been rigorously tested yet.
Some parents may claim a 'miracle cure' from a special diet that
does nothing for another autistic child. However, anecdotal evidence
suggests that a fair number of parents see varying degrees of improvement
in their child with the removal of artificial flavor and coloring,
(dairy-free), gluten (wheat-free) or salicylates
(found in certain fruits) from diet. In addition, some parents
find that certain herbs,
vitamins or yeasts
have helped. To date, most of these approaches lack the rigorous
research that would qualify them as evidence-based
For more information, see Biomedical Intervention
on the Early
Maintain a health skepticism toward all INTERVENTIONS!
Some people claim miraculous benefits, in good
faith or otherwise, for interventions that are not yet rigorously
tested. But some of these therapies may help, even if it is only
addressing a comorbid
issue alongside autism or Asperger's syndrome. Remember that
each child has a diverse range of issues from being on the autism spectrum and will respond to various interventions in various ways.
There are also less reputable services providing miracle cures on
the Internet that seek to exploit every parents desire to see their
child develop as normally as possible.
Some children improve substantially even without
therapy, so it is very difficult to know when therapy has definitely
made the difference. In other cases, a therapy may work so well
for one child it will appear as if it has 'cured' the autism, but
may only have moderate to little effect for most other children.
Rigorous testing gets around this by looking at large groups of
children under a therapy, and have a 'control group' of children
not under the therapy. Unfortunately this approach has not been
applied to many new therapies so far.
When looking at interventions, try not to be swayed
by unsubstantiated claims on websites or glossy brochures. You will
also be looking for the following in this order:
• Rigorous controlled double blind trials to establish
an intervention as evidence-based
• General agreement on effectiveness from autism
associations, researchers, journals etc.
• Anecdotal evidence from wide range of parents
who have used the therapy.
Remember the overwhelming majority of parents
eventually conclude that the best thing for their child is focusing
on love, patience, hard work and finding a suitable mix of therapies
instead of the 'miracle cure'.
finances, interventions and autism
Parents want the bets for their children, and
some therapies are very expensive. Check with your nearest autism
association about government subsidies, financial aid, therapists
who provide 'sliding scales' of fees for low-income families and
so on. Joining a support group is great way to learn from other
parents' experiences about cost-effective interventions. If you
are unable to afford therapies, or have none in your region, see
the Do-it-yourself early
intervention fact sheet.
Consider making lifestyle changes to pay for interventions.
Choosing a simpler lifestyle will not only free up money for your
child's future but will probably be better for the environment as
well. These personal sacrifices are difficult for many parents of
newly diagnosed children to overcome. Early intervention therapies
take sacrifice, but the hard work will be worth it in the long run.
The glass is half full
Actively choose to see the positive side of things.
Concentrating on the negative aspects of autism or Asperger's will
only discourage you and your child. Look out for and celebrate all
signs of progress and reaching milestones. Concentrate on the things
your child does well and let them know about it.
Encourage your therapists, teachers and family.
A positive attitude is infectious and others will want to help your
child and your family even more. Provide them, with the most up-to-date
information possible. Attitude counts for so much - choose to never
Ignore stigma and unhelpful comments
behaviors from your child in public places can be difficult
to handle. A tantrum in a library can lead to all sorts of looks
that take little interpretation - "What a hopeless parent",
"He just doesn't get enough discipline", "What a
horrible child, she must have lousy parents" and so forth.
Unfortunately you may have to develop a tough skins and realize
there are people who make superficial judgments of others. The problem
is their lack of understanding - don't accept their unwarranted
criticism and feel anger toward your child.
maintaining your lifestyle and pacing yourselves
Being a parent of a child with autism or Asperger's
can be similar to running a marathon - you need to pace yourself
for the long term. Don't burn yourself out trying to 'cure' your
child in the first year. Most early intervention therapies take
time before results are seen.
For your own good, and therefore that of your
child, you will need to maintain your friendships, hobbies, interests
and relationships. Where necessary, use respite care, babysitting
and extended family to get time to yourselves and enjoy life. There
is a natural tendency to focus everything on your child but you
will need to achieve a balance in order to provide them with consistent
love and support over the years.
to read a fact sheet on self-care strategies for parents.
to read a message for parents from an adult living with autism.
Click here for the full
range of Asperger's and autism fact sheets at www.autism-help.org
This autism fact sheet is under copyright of www.autism-help.org