If you or someone you love has recently received an autism diagnosis, you’re probably feeling a whole range of emotions, and you might not know what to do or where to start. While statistics from the U.S. Centers for Disease Control and Prevention (CDC) state that 1 in 68 American children are born on the autism spectrum (source), there is no one known cause of autism. There are many different hypotheses and some of the current research is both fascinating and encouraging, but scientists can only agree on one explanation: autism is the result of a combination of genetic and environmental influences.
To make things even more frustrating, no two individuals with autism are the same. Symptoms vary greatly from one person to the next, and treatment plans need to be tailored to your individual child’s abilities and needs. What works for one child might not work for another, and in the face of so many uncertainties and unknowns, parents of autistic children are often left feeling helpless, overwhelmed, and alone.
With autism diagnoses being handed out as frequently as they are, doctors, psychologists, and therapists need to do a better job of equipping parents with the tools they need to fully understand the challenges their child faces. And while the internet is full of autism resources for parents and caregivers, trying to piece it all together and make sense of all of the different autism treatment options available can seem impossible, especially when you’re drowning in feelings of overwhelm and grief during those first few weeks and months after receiving an autism diagnosis for your child.
But there is hope.
The sooner you accept your child’s autism diagnosis, the sooner you can let go of what could have been and start advocating for her, and this post was written to help you do exactly that.
Here are 9 tips to help parents cope with an autism diagnosis.
Grieve. While family and friends will try to find ways to downplay your child’s autism in an effort to help you feel better and make the situation feel less dire, it is impossible to understand the magnitude of hearing the words ‘your child has autism’ unless you’ve lived through it, and I cannot stress enough how important it is to take some time to absorb what those words mean to you, your child, and your family. You may hear people say your child is still the same person, and that having an official diagnosis will actually make your life easier, and even though both of those things are completely true, a part of you has probably been holding onto hope that your child has simply been going through a phase. That she would eventually catch up to her peers and lead a ‘normal’ life. Will she still do those things? Perhaps. But in order to help her get there, you need to find a way to come to terms with and accept the realities of your child’s autism diagnosis.
Ask for help. Being the parent of a child with autism is never dull, and while you will experience some very significant highs as your child reaches milestones and surpasses her goals, there will be low points as well. Caring for a child with special needs can be both physically and mentally exhausting, and one of the best things you can give yourself and your child is the gift of help. Of course, finding ways to get a break can feel impossible if your child struggles with things like meltdowns, picky eating, and sensory challenges, or needs more extensive care like changing diapers or administering medicine, but most countries offer some form of respite care for parents of special needs children. From drop-off programs to individualized care workers inside the home, there are lots of options available and most offer some sort of tax relief. It can take time to find someone you and your child like and trust, but the short-term pain is well worth the long-term gain!!!
Educate yourself. As you navigate through all of the literature about autism and start putting together a treatment plan for your child, you will start hearing terms you’ve probably never heard of before, like ABA Therapy (Applied Behavior Analysis), IBI Therapy (Intensive Behavioral Intervention), IEP (Individualized Education Program), and 504 plan (an education plan for those who don’t qualify for an IEP). If your child requires occupational therapy (OT) to help develop her motor skills and/or sensory processing challenges, you will also need to familiarize yourself with things like dyspraxia, kinesthesia, vestibular, and proprioception, and as you add other therapists and specialists into the mix, your vocabulary will continue to increase over time.
This glossary from the Autism Community Training offers an extensive list of terms and definitions that will help you make sense of all of the information you come across in the coming weeks, months, and years. Bookmark it on your web browser and print off a copy to keep in your car for easy reference, but remember that you are not expected to know what all of these things mean right from the get-go. Ask your child’s doctors, therapists, and specialists to stop and explain things as they relate to your child’s individual treatment plan so you have a better understanding of her therapy goals and can make informed decisions along the way.
Read. There are also lots of books you can buy to educate yourself, your family, and your friends about autism. We’ve rounded up some great picks to get you started.
- Autism Every Day: Over 150 Strategies Lived and Learned by a Professional Autism Consultant with 3 Sons on the Spectrum: This book’s author has both professional and personal experience with ASD, and she offers a great selection of techniques for the entire autism spectrum.
- Ten Things Every Child with Autism Wishes You Knew: A book which gives a humorous and compassionate look at autism, helping to give a better understanding of the condition.
- A Parent’s Guide to High-Functioning Autism Spectrum Disorder, Second Edition: How to Meet the Challenges and Help Your Child Thrive: Learn how to work with your child’s unique struggles and harness his or her unique gifts.
- Neurotribes: The Legacy of Autism and the Future of Neurodiversity: A New York Times bestseller that turns on its head everything that we thought we knew about ASD. A must read.
- AUTISM – Behind The Locked Door: Understanding My Life as an Autistic: Written by a 34 year old autistic man, he shares practical solutions to dealing with the sometimes bizarre behaviors of ASD people.
- 101 Games and Activities for Children With Autism, Asperger’s and Sensory Processing Disorders: Amazing ideas to help those with sensory processing disorders learn and grow through play.
- The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism: Written memoir-style by a 13 year old boy, the book allows anyone who wishes to understand ASD a better opportunity to see how their minds work.
- An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn: A fantastic guide for parents on how to turn everyday activities such as breakfast or bath time into opportunities for development in very young ASD kids.
- Autism Resources For Parents, Teachers And Caregivers – The Ultimate Guide: Top Autism Spectrum Resources You Need to Know: A free e-book which compiles all of the most powerful resources available to ASD parents and caregivers online.
For books to teach siblings and classmates about autism, as well as educating your child about her own diagnosis, CLICK HERE.
Create a team. Once you’ve come to terms with your child’s autism diagnosis and have a better understanding of where her struggles lie and what different treatment options she may benefit from, it’s time to pull together a team so you can formulate a treatment plan. You may have already been referred to different specialists by the psychologist who diagnosed your child, but don’t be afraid to speak to other therapists along the way until you find a team you’re comfortable with. Your child’s doctors and therapists will be an integral part of her treatment plan, and taking the time to formulate a team your family is comfortable with can make all the difference.
Research assistance options. Many countries offer assistance programs to individuals with special needs as well as their family members and caregivers. You will likely have to dig deep to find out which benefits your family qualifies for, and may have to put your name on different waitlists before your quality for full assistance, so take the time to do your research now. Remember not to rely on your child’s doctors and therapists for a full list of assistance options as they may not be up-to-date on all of the different funding options available to you. Look online and trade notes with other parents and caregivers!
Consider biomedical treatment. When looking for autism treatment options online, you will likely stumble upon an article (or ten) about using biomedical treatment to treat autism. From dietary changes to using probiotics to using more extensive therapies, biomedical treatment can (and should) only be used under the direction of a trained medical practitioner. It’s a bit of a controversial topic in the world of autism treatment plans, and goes above and beyond the scope of this article, but if you’re interested considering biomedical treatment for your child, make sure to do your research and seek the help of a trained professional.
Make sleep a priority. Getting 8 hours of solid sleep each night is difficult for the average parent, let alone those who have children with special needs and sleep disturbances, but few people realize just how important it is. Chronic sleep deprivation leads to a whole host of health issues, like heart disease, high blood pressure, diabetes, and stroke, and it has negative effects on weight gain, cognitive impairment, and symptoms of depression. It can also zap you of energy, increase your feelings of frustration and irritability, and make you more emotionally volatile.
If finding the time to sleep is challenging for you, consider:
- Trading off with your spouse for night wake-ups/weekend sleep-ins
- Scheduling time for cat naps while your child is in school, therapy, or engaged in quiet activities at home
- Going to sleep and waking up at the same time as your child each day
- Hiring help (i.e. respite care, babysitter, etc.)
If finding ways to fall asleep – and stay asleep – is difficult for you, consider:
- Sticking to a strict sleep routine
- Getting at least 30 minutes of physical activity each day
- Limiting caffeine and alcohol
- Unplugging from electronics at least an hour before bed
- Establishing a predictable bedtime routine
- Seeking professional help to discuss supplements (i.e. melatonin) and stress management
Connect with other parents and caregivers. Being the parent of a child with autism can be very lonely, and finding ways to connect with parents who understand the ins and outs of special needs parenting can make you feel less isolated. Whether it’s having someone you can trade notes with about different therapy options, being able to enjoy playdates without apologizing for meltdowns, picky eating, or inappropriate behaviors, or having someone you can call when you feel overwhelmed, connecting with other autism parents can go a long way in helping you feel accepted and less alone.
Have a plan. Raising a child with autism can be extremely unpredictable, and arming yourself with a plan of action can make a world of difference of helping you feel in control. Of course, it’s completely impossible to plan for every eventuality, but taking the time to anticipate the things that can go wrong – and formulating strategies you can use to minimize negative reactions – is a good starting point. Paying attention to your child’s nonverbal cues, creating a Calm Down Box, using Social Stories and visual schedules, and teaching appropriate self-regulation are all great ways to equip yourself and your child with appropriate tools to use when life becomes overwhelming.
Make time for yourself. While it might seem impossible to find the time to work on a hobby or project of your own, finding ways to get some R&R and focus on something you’re passionate about outside of being a parent and spouse can do wonders for your soul. Enroll yourself in pottery lessons, teach yourself how to knit, take a cooking class, book yourself in for a manicure, grab coffee with with a friend, or start a blog! Whatever you choose to do, make time for it. You deserve a break, and will feel much more relaxed and rested afterwards, which will have a positive impact on the care you are able to offer your family.
Raising a child with autism is like being on a lifelong roller coaster. It’s unpredictable and scary, and you will experience some pretty significant ups and downs along the way. There will be moments in which you feel incredibly lonely, and other times where you feel extremely blessed for all of the amazing people who continue to touch your life. And while the good times may sometimes feel few and far between, you will learn to start living in the moment so you can appreciate the little things in life.
But you’ll still have bad days.
Days in which you’ll question if you are good enough. You’ll wonder whether you can possibly give your child all the things she needs. Surely you aren’t qualified to handle all of the things life has thrown at you?!
But even in your darkest moments, the fierceness with which you love your child will keep you moving forward. You’ll wake up with renewed commitment and determination each morning, regardless of the cards you were dealt with the day before.
You’ll continue to work with your child and encourage her to do things doctors and therapists told you she’d never be able to do, and in the process, you’ll never give up hope. You’ll put your needs second so you can put your child’s first, and you’ll be there, front and center, to celebrate every little achievement.
You are, and will continue to be, your child’s biggest cheerleader, and that is why you are an amazing parent.
You’re doing a great job, and you are not alone.
Don’t ever forget that.
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