One of the first steps, after receiving the diagnosis of autism, is to seek knowledge. Read books, search the web and search out others who can help you navigate through all that lies ahead.
Sicile-Kira gives some more great advice in her book, Autism Spectrum Disorders, One of the first steps to take is to start "seeking knowledge". You need to contact, read, learn and document.
- Contact: Start by contacting non-profit organizations involved in autism. A place to start may be the Autism Society of America. There are local chapters throughout the USA. The medical professionals you see or early intervention specialist will probably know of local support groups in your area. By contacting autism organizations you will in turn meet other families who are impacted by autism. The Autism Research Institute is another great place to start.
- Read: Go to your local library or grab a coffee at your local bookstore and start reading. Read books written not only by parents of children with autism, but also adults living with ASD. They help shed light on what your child may be feeling and help you understand some of the behaviours from a true first hand account. Temple Grandin is one of the most well-known in the community and has several great books. Also, search the web and start reviewing different sites. There are a lot of sites and some are better then others. I would just start searching and taking notes. You will begin to find sites that you like, some with good information and some that even have a good support network. Just be careful and if someone offers advice, remember that you do not really know who is on the other end and what works for one child may not work for everyone. Gathering information is the first step to deciphering it all. Again, the Autism Research Institute is another first step.
- Learn: You need to start learning about services and funding in your area. Start applying for different services and getting on wait-lists if necessary. For example, for my son to receive a speech assessment and start therapy it took over four weeks of searching and then going on a waiting list.
- Document: It is very important that you begin documenting everything associated with your child's diagnosis and treatment. Keep notes on behaviours and videotape your child, ask for and keep copies of all medical tests and assessments. Keep track of phone calls. Start a notebook and keep it all in chronological order and jot down notes on your calender when someone is supposed to call you back. My PDA has been a best friend and I take my son's notebook to all my doctor appointments and meetings.
While all of this is important, remember to always try and take good care of yourself. Keep the lines of communication open with your spouse. Go out and do something unrelated to autism. Ask others for help and support. Family and friends are important and if you are unfortunate not to have anyone close by, again, seek out support groups in your area. This is all just the first steps to discovering more about your child and how to help them and you reach that wonderful soul locked inside.
The copyright of the article Autism: First Steps in Autism Research is owned by Tracey Thompson. Permission to republish Autism: First Steps in print or online must be granted by the author in writing.
