There really aren’t words to describe how it feels to find out that your child has autism. “Like getting hit by a truck”; “having the wind knocked out of my sails”; “completely devastated”; “lost and alone;” are only weak attempts to convey the feelings of hopelessness, despair and confusion that I experienced when my son was diagnosed at the age of three. While certainly nothing could have made the pain go away, I do know that our lives post-diagnosis would have been much less stressful, and our time and money would have been used much more productively, had I been given some sort of direction as we set off in our journey through life with autism.
So, here it is — some advice I wish I had been given upon receiving my son’s diagnosis. I hope you find it helpful.
Get a formal, written diagnosis.
Although getting an official written diagnosis may seem like rubbing salt into the wound, having it may enable you to receive funding, extra support or treatment to which you may not otherwise be entitled.
Read as much as you can about autism and the therapies that exist, taking into consideration whether scientific evidence supports the effectiveness of each therapeutic approach.
Network with other parents and professionals.
Word of mouth can get you far in your quest for help and resources. With a staggering 1 in 110 children now having autism, it is unfortunately not at all difficult to find someone who has a child with autism or knows someone who does. Conduct Internet searches for “autism” along with with your city name to find local people, groups and organizations that may be able to assist you.
Look for treatment methodologies that are based on science.
Single-case observations and subjective personal accounts of treatment efficacy, also known as anecdotal evidence, should be taken as opinion only – not fact. When there is an absence of controlled, scientific studies in published, peer-reviewed journals, tread with caution. Parents have to make decisions that they feel are right for their own children but I have always felt that extra bit of comfort when I have scientific data supporting my treatment decisions. Watch Ben Goldacre's informative TED Talk video entitled "Battlling Bad Science" for further insight into what makes something scientifically valid. For further information specifically on the importance of using scientifically validated treatments to treat people with Autism, review an article appearing on the website of the Association for Science in Autism Treatment (ASAT) entitled "What is Evidence-Based Practice and Why Should We Care?"
Don’t believe everything you hear or find online.
Remember that pretty much anyone can create a website. Just because it's online, doesn't meen that it's true or based on science. Take everything you read online and in newspapers with a grain of salt.
Beware of Pseudoscientific Therapies
Unfortunately, there are many protocols and procedures out there that call themselves "therapies" for people with Autism. While some may simply not work, others can compromise and individuals safety, health or well-being, not to mention, drain parents' bank accounts. Check out this helpful list of Warning Signs published by ASAT.
Without the use of data, it is very difficult to determine if your teaching procedures are effective. Furthermore, data helps ensure consistency in teaching which is especially important when there is more than one person working with your child. Compare these two examples…
Parent… “How did Johnny do today?”
Therapist … “He had great eye contact. He looked at me a lot.”
So how well did Johnny really do? What is “a lot”? One really can’t be sure. Wouldn’t this approach be better…
Parent… “How did Johnny do today?”
Therapist… “He had great eye contact. Out of the 10 times that I called his name while standing 4 feet away, he looked 9 of those times. Yesterday, with this same criteria, he looked all 10 times which means that he has achieved mastery of this skill and is now ready to move onto the next condition where I call his name from 6 feet away. After he masters that condition, (which means he scores 90% or over during two consecutive learning sessions), the next criteria he will work on is Johnny looking while I call him from 6 feet away while he is playing with a toy.”
Data removes the subjectivity from teaching, which is in my opinion, imperative for a quality therapy program. Do not be intimidated by data-taking. Most programs have data systems that should be relatively easy for you to understand once explained and reviewed.
Educate friends and family.
Sometimes it can be particularly difficult for the grandparents to appreciate what’s going on. Point them to informative, quality books, articles and websites, such as the ones you’ll find referenced here at autismbeacon.com. You may even want to consider printing out certain pages for those who may not be as computer-savvy.
Don’t use the “wait and see approach”.
If your child has a diagnosis of autism, it is critical to provide intervention as early as possible, even if it means doing this yourself. I’ve seen many parents waste valuable time in a state of denial or waiting for public funding. As much as we may all wish it could happen, it is highly unlikely - if not impossible - that your child will just “grow out of it” and autism will simply disappear.
Get on treatment waiting lists.
Often, there can be waiting lists for both private and public therapy programs. Find out what is available in your area and see if the organizations offering services have waiting lists. If they do, get your name put on. You can always change your mind later. Leave as many doors open as possible.
Get on funding waiting lists.
There may be different opportunities for you to receive government funding in your area. Find out and get your name on these as well. Sometimes private grants may also be available to provide financial assistance. Look into these as well.
Investigate what your insurance will cover.
Many policies will pay for therapies and specialists pertaining to the treatment of autism. Find out if yours does. Even if your policy doesn’t cover “autism treatment” per se, it may cover the provision of services by specific professionals such as psychologists, occupational therapists or speech and language therapists.
Don’t forget about siblings.
Autism’s grasp is far-reaching and can have a significant impact on the siblings of people with autism. Try to set aside some time with your “neurotypical” child or children. Look into sibling support groups that may be available in your area. Check out the many books written especially for children to teach them about autism. [link to my amazon.com store with a search on “autism siblings”]
Take care of yourself.
It’s very easy to get so caught up in helping everyone else in your family, that you forget to look after your own physical and mental health and wellbeing. Take some time out of your busy schedule for a coffee with a friend now and then. Schedule some “me time” at least once a week. Exercise. Seek counseling or join a support group to help you deal with the many emotions brought on by the diagnosis.
Be a therapist.
Even if you opt for a center-based program, your child’s newly acquired skills will need to be “generalized” to family members and the home environment as well. Learn as much as you can so you are able to complement your child’s therapy program and help ensure that his learning applies to many different people, places and situations.
If your child is not getting what he needs, it is up to you to be his voice. Write letters, appeal formal decisions, call often to find out where you stand on waiting lists. Be the squeaky wheel.
Keep organized records of everything.
From data to financial records, keep track of everything and file it away safely every year. Whether it be in a court of law, or for a research study or tax audit, you never know when you may need this information down the road.
Talk with your accountant or financial advisor.
You may be entitled to special tax credits and programs due to your child’s diagnosis. Money you spend on therapy or on alterations to your home to accommodate your child with special needs may also qualify you for certain tax breaks.
Get your family doctor onboard
If your family doctor is not very knowledgeable about autism and treatment approaches, try to gently educate him or her by bringing along information that you can leave behind after each visit, being careful not to pile on too much at once so as to overwhelm him/her. Having a physician on your side can be extremely helpful down the road in your advocacy efforts, and in gaining access to various specialists that you may require.