1. Take Care of You
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| Microsoft |
Even if you think your child has autism, hearing the
diagnosis from a medical professional is upsetting. I strongly suspected my child had autism, but was sad and upset when the psychiatrist told me the formal diagnosis. My love for my son didn't change, but I worried about the struggles he would face. Parents go through a range of thoughts and
emotions including:
- Denial
- Relief
- Helplessness
- Worry
- Overwhelmed
- Grief
Although it is important to get your child into treatment
early, take time to process your own emotions. Being sad or upset does not mean you do not love your child. You are getting use to a new reality - life
as an autism parent. You need to get
through these emotions and build up your own support system.
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| Bill de Blasio on Flickr |
While you may have supportive friends, autism specific support
is important. Support is important from
both an emotional and practical point of view.
Being able to share stories and information with parents in similar
situations is invaluable. Other
parents are great for telling you about the practical aspects of autism including
what treatments worked for their children, accommodations that a school made,
therapists their children liked, etc. You
can join online support groups, find a local personal support group or both.
2. Do some research
After you have processed your emotions around the initial
diagnosis, it is time to learn about autism. This is an important step toward becoming your child's advocate.
There is an overwhelming amount of information related to autism on the
internet. It is important to get your information
from a reliable source. Here are some
reputable websites:
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| David Martyn Hunt on Flickr |
Autism Now (US based)
The National Autism Resource and Information Center is part of the Arc of the United States. It is a
“central point of quality resources and information for individuals with Autism
Spectrum Disorders (ASD) and other developmental disabilities, their families,
and other targeted key stakeholders.”
"This site will provide you with reliable information on
autism and referrals to many helpful services and resources. ASC puts special focus on providing
information, referral and resources for parents and other family members who
are seeking support for children with autism. This site also provides news, resources and links for youths and adults
on the spectrum."
Autism Society
(US based)
US Based organization “which exists to improve the lives of
all affected by autism.”
Autism Speaks
(US based)
Autism Speaks … is “dedicated to funding research into the
causes, prevention,
treatments and a cure for autism; increasing awareness of
autism spectrum disorders; and advocating for the needs of individuals with
autism and their families.”
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| Stevebidmead on Pixaba |
"The range of services Irish Autism Action provides includes
awareness raising, early detection diagnosis, education support, advocacy,
counselling, helpline, home based support, transition planning, social housing,
research information and advice for families upon receiving diagnosis."
"Autism Spectrum Australia (Aspect) is Australia’s leading
service provider for autism and other disabilities .Our vision is to provide
the best possible opportunities for people with autism and other disabilities."
National Autistic
Society (UK based)
“We are the leading UK charity for people with autism
(including Asperger syndrome) and their families. We provide information, support and
pioneering services, and campaign for a better world for people with autism.”
For more information sources, checkout our Helpful Links
page.
3. Find out your child’s legal rights and entitlements
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| Monelgonel on Pixabay |
Parents need to understand what educational supports and accommodations
their children are entitled to. Most of
the websites above provide information on special education provisions that
apply to children with autism in the country they are based in. In addition, your family may be entitled to financial supports. Educational accommodations and financial
supports vary depending on where you live so make sure you look at what applies where your live.
4. Make a Plan
As parents, we get frustrated if we cannot help our
children with autism. Planning is a concrete and necessary step that helps
relieve frustration and get your children on the right track. Some things you need to plan:
- How, when and what you will tell friends and family members
- How, when and what you will tell your child
- What therapies and interventions your child will start with and who will provide them
- The services and supports your child needs at school
- How you can support your child at home
- How to apply for financial services or supports
- How you will monitor your child’s progress
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| Microsoft |
Once you have made the plan, schedule a date in 3 to 6
months to review it. If you aren't already using a diary, now is the time to start.
You will learn a lot on this journey, I know I have. Take a look at three lessons I learnt.
©Mary M Conneely T/A Advocacy in Action
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