The First Steps to Take When Your Child Receives and Autism Diagnosis
I can still remember the sucker punch delivered when the psychologist told me “Your son has autism.” I knew it was a big possibility, but hearing those words out loud was like being hit by a freight train. When your child receives an autism diagnosis, where do you even start? Therapy? Education? Support groups? There is so much information out there, and so many therapy services are offered, that it’s easy to get lost in the confusion. Let’s talk about a few good places to start.
The first thing you should do when your child receives and autism diagnosis is educate yourself. I cannot stress this enough. No, you won’t become an expert overnight; but researching autism and your child’s specific needs will set the foundation for their progress.
You have to remember that you are your child’s biggest advocate. All therapists are not equal, and if you happen to be dealt a poor one, you need to be able to fall back on your own knowledge to realize if something is amiss. Being well educated on the spectrum will ensure that your child gets the proper care. Make sure you don’t miss these less common warning signs of autism.
Here are some helpful resources for learning more about autism:
Look into therapy options
If you’re new to the autism world, you may not have heard this phrase yet: “If you’ve met one person with autism, you’ve met one person with autism.” It means just that – because the spectrum is so vast, and the symptoms are so varied, each person with autism is different. They have different strengths and weaknesses, different sensory sensitivities, and different therapy requirements. Because of these differences, there is no one-size-fits-all recommendation.
Your child may receive specific therapy recommendations along with their autism diagnosis. If this is the case, get these therapies lined up as soon as possible, but still take the time to find out how each one works. Below is a list of common therapies suggested for autism spectrum disorders, and links providing a general overview:
Connect with other autism moms
This is SO important. See, the best therapist in the world is not going to want to talk to you at 3 am when your child is having a full blown meltdown and no one is able to sleep. You need a community of moms who have been there, and who can understand.
One of the best ways to find community is through FaceBook groups. (I never thought I would say that!) I have been involved in some amazing autism groups on FaceBook, and this is an excellent place for parents of newly diagnosed kids to get tons of answers and support. Check these ones out:
You can also find other autism moms through your local therapy services and centers, and sometimes through support groups at your church.
Make sure you get a social worker as quickly as possible. They can help you find many services for your child, including respite care.
Know who to support
I don’t normally get into discussions about who to support or not support, but I feel strongly obligated to add this. Many wonderful mothers immediately want to join every “support” and “awareness” group there is when their child receives an autism diagnosis. Since most people don’t take (or have) the time to thoroughly investigate every organization before they support it, they may not know what that organization truly stands for.
With that said, Autism Speaks is NOT an autism advocacy group. They look like it on the surface, but their ultimate goal is to find a genetic marker to detect in prenatal scans, in order to abort autistic babies before they are allowed to enter the world. A huge portion of their revenue goes to this research, while less than 5% goes to actually helping autistic people and families. Their goal is to abolish the entire autism spectrum, so please do not get sucked into supporting them, like so many others have. Instead, look for groups who are supporting autism families, funding therapy programs, and researching new treatment options.
Some true autism advocacy groups are:
Autism Self Advocacy Network (ASAN) “Nothing about us without us” says it all!
Remind yourself that you’re not alone
An autism diagnosis is not the end of the world, even as devastating as it can feel. Your child is still the same person they were before that label was given. Remember that. With all the therapy and treatment options out there today, your child has a much better chance of thriving in ways that would not have been possible in previous generations.
If you have pressing questions, feel free to email me or comment below. Life is better together, so don’t try to go it alone!