Receiving an autism diagnosis for your child can be very overwhelming. There is so much to process and deal with, such as coming to terms with the diagnosis, choosing the right therapies, navigating through the educational system, dealing with social issues, and we aren’t even going to get into concerns about the future!
So what do you do? How do you process it all?
Today’s post is dedicated to answering some of those questions. Here’s a quick guide, with several different categories that will help you and your family find your way on this autism journey.
Where to Find Services:
Do you have a child with autism under the age of 3? Check into receiving state based services. Some states call it Child Find or Early Intervention Services. The waiting list to receive services may vary depending on which state you live in. You can also utilize your private insurance to start receiving services too.
Is your child with autism over the age of 3? Look into getting school based services and/or utilize your private insurance. Start by contacting your local school district. They should be able to point you in the right direction. Some states offer preschool for children with developmental delays starting at the age of 3.
Please be aware that some school based therapy programs will want to do their own testing, separate from any testing your child may have had from an outside source. A medical diagnosis does not always guarantee school based services. Schools only work with issues that may affect a child’s ability to perform in the classroom. This is where private insurance comes in. It helps to fill in the gaps of what schools won’t cover. For example, a school occupational therapist typically doesn’t work with food aversions. But an occupational therapist working at an outpatient rehab clinic paid for by your private insurance would.
Referrals for therapy outside of school are typically made by your child’s primary care doctor.
Agencies that Serve Persons with Autism:
Autism Speaks is a non-profit organization that has a large focus on autism research. Their goal is to prevent autism and find a cure for it. Autism Speaks has been instrumental with creating awareness about autism into the mainstream public. Their “Light It Up Blue” campaign that occurs every year on World Autism Awareness Day (April 2nd) is very popular, along with their Walk Now for Autism Speaks fundraising events.
The Autism Society is considered one of the most trusted organizations for autism advocacy and awareness. It was founded in 1965 and is the oldest and largest grassroots organization in the autism community. National conferences about autism are held and individuals with autism actively participate in key decision making roles.
National Autism Association is a parent run, non-profit organization that is known for their wandering prevention and response efforts. This organization also holds a conference and has a limited number of grants available through their Helping Hand program to assist low income families with medications, therapy and evaluations for the family member with autism.
Easter Seals has been advocating for persons with disabilities as a grassroots organization since 1934. Autism is one of the many disabilities covered in their services. This non-profit organization provides services for persons with autism at every age. Services include early intervention, information about inclusive day care centers, job training, day programs, and respite programs.
Your local community may have other organizations that serve persons with autism as well.
Treatments and Therapies Available:
There are many different ways that autism is treated, such as with therapies, medications, and diet modifications.
Therapy options include: Speech and Language Therapy, Occupational Therapy, Physical Therapy, Applied Behavior Analysis (ABA), FloorTime or DIR, Picture Exchange Communication System (PECS), Training and Education of Autistic and Related Communication Handicapped Children (TEACCH) and many others. The most common therapy options are Speech Therapy, Occupational Therapy, and ABA Therapy. Check out this link from Autism Speaks that goes into more detail about the above listed therapies and a few others too.
Medication given to children with autism is prescribed for a variety of reasons. Sometimes it is given to help a child focus a little better. It can also be given to control certain behaviors or to help with sleep issues. Medications should only be given under the direction of a medical doctor and should be monitored regularly for effectiveness.
Some autism families have found benefits in a gluten free-casein free (GFCF) diet and/0r certain vitamins.
Please know that each person with autism is different. A therapy that works very well with one child might show very little success with your child. Also, treatments and therapies may work best when a combination of them are working together and when all of the therapists and doctors are working together as a team.
Access to certain treatments and therapies may also vary depending upon your insurance or ability to pay out of pocket. Sometimes there are waiting lists to receive certain therapies if the demand is large or if there is only a small number of providers in the area. In addition, being on a waiting list for a Medicaid waiver to receive therapies in certain states can last years. At the time of this post, only 39 states and the District of Columbia have Autism Insurance Reform Laws. More advocacy is definitely needed in this area, especially since early intervention has been shown to make a big difference!
Autism Speaks has a Resource Guide in which you can click on your state to find out which services are available in your area. This not only includes therapy resources, but information about camps, doctors, respite, legal services, and more. While this list is not all inclusive, it’s a great start and can possibly point you in the direction you need to go if you can’t find what you are looking for.
Autism Speaks also has a 100 Day Kit for families with young children diagnosed with autism. It’s free for download. If your child has received an autism diagnosis within the past six months, you can request to receive a hard copy for free. If you have had an autism diagnosis for over six months, you can order a hard copy for $17.95.
The Autism Society has a Contact Center dedicated to answering questions about autism. This phone service gives you free access to trained professionals. It is available 7 days a week from 9am to 9pm EST in English and Spanish. To access this service, call 1-800-3AUTISM and press 2 for information and referrals.
The National Autism Association has a program called the Big Red Safety Box that helps to deal with the common issue of wandering among persons with autism. The safety box includes a booklet, two door and window alarms, a shoe ID tag, stop sign prompts for doors and windows, safety alert window clings for your car or home window, and a safety alert wristband.
Popular Autism Bloggers and Facebook Pages:
These bloggers are pretty popular in the blogosphere. Please don’t take this as an endorsement from me of everything said by these bloggers. I just want to share with you some links so that you can see several different viewpoints of autism.
Autism Daddy: This is a very popular blog written by an anonymous dad of a child with severe autism in New York. He writes with candor and humor. He also has a pretty interactive Facebook page with over 112,000 likes! Yeah, he’s pretty popular. 🙂
Autism from a Father’s Point of View: This blog is written by Stuart Duncan, the father of an autistic son. After noticing similarities between himself and his son, Stuart was diagnosed with aspergers at the age of 36. Here’s a link to his Facebook page: https://www.facebook.com/autismfather
Singing Through the Rain – Written by Kathryn Sneed, this faith based blog shares the day to day experiences of a military spouse and mom of two special needs children. She doesn’t just write about special needs stuff though. She sometimes blogs about recipes and does giveaways on occasion. Here’s a link to her blog’s Facebook page: https://www.facebook.com/singingthroughtherain
Autism with a Side of Fries is also pretty popular, with over 40,000 Facebook fans. This mom of a child with autism often posts questions sent to her from Facebook friends on how to deal with autism related issues. Persons who have liked her Facebook page are given the chance to respond to the question and share what worked for them. She also blogs at: http://autismwithasideoffries.blogspot.com
There are many other blogs out there, but this quick list will help you get started.
Developing a Support System:
Now and in the days to come, it will be very important for you to have at least one person around that has taken the walk down Autism Lane. I can’t stress to you enough the value of someone who “gets it” and can celebrate every milestone with you, no matter how small.
I wasn’t aware of any formal support groups in one area that I lived in. So you know what I did? I created my own group. I started getting to know the parents of Big Brother’s classmates. We would get together for birthday parties and text each other on group text whenever issues arose. The moms would often get together for breakfast and it was the perfect time to express any issues, concerns, joys, and information that we learned that others may benefit from. I also made a point of getting to know the other moms and dads whenever I would take Big Brother to therapy appointments.
Getting out of your comfort zone and talking to other autism families can help a lot when you are trying to decide which therapy to do and with which therapist, which teacher would be best for mainstreaming your child, which hairstylist is best with an autistic child…the list goes on and on!
Support can also come from your faith community. When I was struggling, a church I attended stepped up and created a special needs ministry for my son. Click here to read about How Special Needs Ministry Blessed My Family. By the way, I still keep in touch with many of the persons that worked in that special needs ministry. They are a great support system for me!
I also have some great internet friends that I’ve met through this blog, Facebook, and Twitter. The moral of the story? Get a network of people that will be there when the sun is shining and that will be willing to hold your arms up when you get tired.
I hope that this quick list of resources and links will be helpful as you start the journey down Autism Lane!