Autism series part II: What to expect after an official ASD diagnosis
Your life has been turned upside down. You’ve had a child recently diagnosed with Autism and you are feeling confusion, anger, sadness and … RELIEF? That is what the majority of a group of ASD parents reported during recent Q & A sessions. They commonly shared relief for one of two reasons 1) because their parental instincts were spot on and 2) to finally being on the pathway to help, answers and support. I was impressed by the wisdom and generosity of these parents as they answered several of my questions related to their initial reactions to their own children’s diagnosis and what new parents to ASD should expect during the first few months. Their answers are real, insightful, and unexpected. I’ve grouped their answers together under each question for easier reading. I’ve also included a short video clip from Temple Grandin, describing the “Autistic Brain” and “thinking in pictures”. Here’s what they had to say…
What does an ASD diagnosis mean for my child and family?
“An ASD diagnosis is hard to describe because it can be SO broad and your child’s symptoms can be hard to find or right up in your face. Your child is the same child he/she was before the diagnosis. The Autism Diagnosis doesn’t change who they are or who you thought they were.”
“It means that it might be difficult for them to communicate what they need, pay close attention to their non-verbals and you’ll soon speak their language.”
“It’s hard to even begin understanding Autism because of the complicated terminology. There are a lot of Autism jargon words. Learn them. That way when you go online to read about what other parents are doing, you’ll understand what they are talking about.”
“What does it mean?You’ll have to figure it out for you. But it won’t get better right away, when you find the right combination of things you’ll be amazed at the change they can make.”
WHAT SHOULD NEW ASD PARENTS EXPECT DURING THE FIRST FEW WEEKS/MONTHS AFTER DIAGNOSIS?
“I would tell parents that What to Expect, Is Not What They’re Expecting. I know that’s vague, but I’d tell them to expect relief from months or maybe even years of confusion.”
“Expect a lot of tears, frustration and questions, but to remember that to experience all of that is okay, healthy even. Answers, acceptance and help will come.”
HOW DO I KNOW WHAT THE BEST TREATMENT IS FOR MY CHILD?
“You will get a TON of “helpful advice and suggestions”, most often it will be conflicting. Remember the source and look for proven and researched treatment options.”
“There isn’t a single magic treatment that is going to help every child with ASD.”
“Do some reading, choose one thing to try at a time. If one treatment doesn’t seem to be working, don’t feel bad about giving up and trying something else. When you feel like you can cope, add something new.”
“I have found really good information on the Autism Society website. They normally don’t post or suggest treatments that have not been thoroughly tested.”
FINDING A SUPPORT GROUP
“I’d tell them that it’s going to be hard to relate to other parents. They don’t know what you’re going through. Find an Autism Parent Support Group as soon as possible.”
“There will be several neighbors, family members and friends that want to help, but won’t be to offer relatable advice or experience. Lean on them for support, not professional direction.”
Being able to share your experience with other parents who have also experienced what you’re living through can be very therapeutic and helpful. Find a local support group and attend regularly. If you can’t find one, start one-even if it’s just you and your spouse. Find time to tell funny stories from the week, cry together and share recent information about what you’ve learned or observed.
BREAKING THE NEWS TO FRIENDS AND FAMILY
This last section was not a question that I originally planned on asking. This topic of “how to break the news to family and friends” kept coming up and was evidently something that they felt strongly about. Several parents described feeling nervous about friends and family feeling “bad for us” and that the diagnosis would somehow change their relationship.
“If I could go back to the day after, I would tell myself: Not everyone will handle it as well as you. To you the diagnosis is a relief, but to them it’s a shock. Be understanding. Try to help them understand why the diagnosis is a GOOD thing.”
“Tell your family and friends that your child is the same beautiful, amazing person, and that it’s a blessing to have the diagnosis.”
“You finally have a path to step on to that thousands have parents have been on before you. You will be loved and cared for.”
ANY ADDITIONAL WORDS OF ADVICE OR ENCOURAGEMENT?
“Don’t be intimidated by the diagnosis or the “professionals”. Your son or daughter is your child. You’re the one living with them, loving them, and helping them. Don’t be afraid to speak up.”
“I would go back and tell myself to stop the thoughts like “If you could just feed yourself….” or “Other parents don’t have to tie their 9 year old’s shoes…” The pity party never helps…ever.”
“Remember that they are all still children and that children make messes, cry and have freak outs too. All of their tantrums and behaviors don’t have to be because they have Autism.”
TAKING THE FIRST STEPS
Although there is no cure for Autism at this point, recent research suggests that the younger the child is at the point of treatment integration, chances of significant progress improve greatly. Starting with a social skill based regiment at a younger age helps your child develop necessary skills to meet emotional and developmental milestones. Creating an action plan as parents with your treatment team is helpful. Review the action plan regularly with the team and make adjustments as needed.
Remember that everything your child does is a form of communication. Your child is communicating his or her thoughts through their own form of body language, facial expressions, and actions. As you pay close attention to your child’s behavior and immediate reactions, you will begin to pick up on small auditory triggers such as dogs barking or the rain hitting the house. Identify these triggers and prepare for them if possible, your child may not be able to tell you.
Trying to decide between the several different treatment options and trying to distinguish between the effective and non-effective treatments can be very challenging. Understand that professionals mean well and truly want to help, but it is impossible to try every recommended medication, fill out every chart, or meet with each therapist that suggests a new treatment.
Smarter Parenting will provide you with the tools to create the social skills based regiment at home. In the near future you will find several examples of daily schedules, picture charts, and reward systems that are designed to fit your child’s needs.
Don’t beat yourself up for bad parenting days. Be patient. Love yourself, love your child.
Temple Grandin is a strong voice for the Autism community and was one of the first people diagnosed in the U.S. She explains the power of visual brain functioning and thought processes of ASD minds in a clear and helpful way. Watch the clip below to learn more about “thinking in pictures”.
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Jesse Heaton is a Mental Health Therapist who has worked with children and families for the last 12 years. Jesse has worked in several different treatment settings including detention programs, treatment homes, recovery centers and an Autism Spectrum long term care facility. Jesse is a parent of three children and a member of the Smarter Parenting Team.