An Autism, Asperger’s, or any other ASD diagnosis can be devastating news to an entire family. But it can also be a blessing in disguise. Many parents worry that their child will end up atypical and needing additional or “special” support in order to lead an independent life. Although the road to child-rearing just got a lot bumpier, it will definitely be more interesting and eventful with a child with a disability.
I do not have a child on the spectrum of my own, but I have taught them for years. I spent the majority of my classroom teaching career working with children with autism, among other disabilities. Even though I am no longer in the classroom, I still work with children on the Autism Spectrum and their families every day.
My first piece of advice is to celebrate, grieve, discuss, scream, plan and get out all those emotions as much as and as often as you need to. Parents process the diagnosis of a disability for their child in different ways. So, just know, however you react to your child’s diagnosis is completely normal and is the first step in coping, accepting and dealing with the difficult situation.
My second piece of advice is to have a serious conversation with any and all decision makers in your child’s life. Caregivers come in many forms and relationships, spouses, partners, biological parents, grandparents, aunts, uncles, etc. During this talk, you all must decide what you want for your child, or children, with autism.
When discussing goals, consider what life functions you would like your child to fulfill.
If your child is under the age of 5, are you wanting them to go to the bathroom independently? Is independently holding utensils, bottles, tooth brushes, and other basic self-care activities the greatest priority? Do you want to put your child on medications that will likely hook them for the rest of their life? If they have not yet developed speech, should you look into American Sign Language (ASL) or a Picture Exchange Communication System (PECS) that will help them communicate through pictures and printed text?
If your child is between the ages of 5 and 10, do you want to improve their verbal communication skills or should they learn to communicate with ASL or PECS? Would you like your child to participate as much as possible with their typically developing peers? Is it appropriate for your child to be with their typically developing peers? Do you want your child to perform on or close to the academic performance of their typically developing peers?
If your child is between the ages of ten to fourteen, do you see your child going to college or trade school? Would you like your child to participate in organized sports? How advanced would you like your child to be academically and socially? What goals does your child have for themselves?
If your child is fourteen or older, what kind of job do you see them holding? What goals does your child have for themselves? Where do you see them living throughout their adulthood? Who will look after your child if you and the other caregivers are not around? Is your goal for your child to live independently with little to no assistance?
Take a deep breath.
Discussing these topics may be overwhelming and may leave you feeling dazed. That is OK. You may not need to know the answers to every single question right away, if at all. However, you do need to talk about them. Maintaining an ongoing conversation about the status and goals you have for your child with autism, or any other disability, is absolutely paramount for everyone involved in your child’s life, including your child.
Not only does discussing the questions mentioned above help shape the narrative of your child’s future, but it also helps everyone communicate their expectations. By voicing what you do or do not want, you and your caregiving team will be able to develop a game plan to accomplish the goals discussed. You will also be able to realize what goals are achievable and realistic.
For some kids on the spectrum, they are more than capable of leading a similar life to that of their typically developing peers. For other kids on the spectrum, they might need more support and encouragement. No matter what end of the spectrum your child is on, they are absolutely, 100% capable of maintaining some degree of independence. It is up to you to allow them to show off their skills through minimally assisted activities and make mistakes.
My third piece of advice, is to begin consulting with your pediatrician, call your state’s education department to get resources, trainings, and help for you and your child through Early Childhood Intervention (ECI), Speech Therapy, Occupational Therapy, Physical Therapy, and other support groups that will help your child’s development progress. You can also consult with acupuncturists, chiropractors, and/or holistic doctors who have had experience with people with autism.
Make sure to be open with your doctors and therapists about what you envision for your child. Tell them the development, life skills, and future goals you have for your child. By openly communicating your wants, they will be able to provide their professional recommendation for an appropriate course of action.
If you are uncertain or uneasy about a particular course of action recommended by a professional, unapologetically get a second or even a third opinion by another doctor or therapist. Although these professionals hold a wealth of knowledge, they are not all knowing, especially when it comes to the intricacies and uniqueness of your child.
Autism is not an open and shut case. It takes several forms and demands an array of strategies and techniques to encourage developmental progress.
My fourth and final piece of advice (for now) is to try and give your child as many life experiences and opportunities to explore as you are comfortable with. You may not have your child go to every party or event you are invited to, but it is important to expose them to their community. Not only will these experiences help your child cope with various environments, but it will also give you the opportunity to teach your child, in real time, how to interact with other people.
Autism, although challenging and taxing at times, is beautiful. If you are willing to put in the work to help your child grow to be as independent as possible, you will begin to see the diamonds in the rough.
Wanting to get involved? Check out “https://www.autismspeaks.org/” and “https://tacanow.org/” for nation wide support, updates, and community.
If you are in Texas, check out/contact “http://prntexas.org/” for free resources and guides on your next steps.
Looking for more information and support?
Feel free to reach out to me at SpEdGrowPro@gmail.com or drop a comment below about your challenges and experiences.
Jasmine Habeeb is a certified special education teacher who graduated from The University of Texas - Austin with a degree in special education. She enjoys sharing her opinions, recommendations, and current events on all things education.