So, it is official: The words have been spoken to you. Your child has been given an autistic spectrum disorder diagnosis. Your mind is in overload of what this means. Your emotions are struggling to stay in check. Your thoughts are in overdrive trying to sort this out. You are completely overwhelmed and don’t know how to handle this.
Take a deep breath — in and out. Your world is about to change, but you will be okay.
This is the start of a journey that no one chooses, but you will come out a better person. It will take you to levels you never thought you had in you — and you will see just how strong you really are. It will teach you to be patient, understanding, and compassionate. It will teach you to count the smallest of blessings to everyone else, but will be huge for you. It will teach you how to do research and how to question everything along the way. It will teach you to be open-minded, but at the same time trust your instincts. You will be surprised how you will take on the world for your child. Above all else, it will teach unconditional love.
But first, you will ask yourself, now what?
1. Allow yourself to grieve.
We usually hear the word “grieve” when a loved one passes away. Although our child is here, the child you had in your mind and how their life would be, how your relationship with them would be, has died. It is not only okay, but it is also normal to feel sad, angry, or that life is unfair. Give yourself a break, and allow yourself to feel those emotions. Mourn over the loss, so you can move on in the direction your life is taking you. It will be different, but it will become your normal. It takes time to get there, so try not to beat yourself up if it doesn’t happen right away. A word of caution: It is not healthy to stay in this phase for a long period of time, so if you find yourself here, seek help. Your child needs you, and in order for you to do your best, you need to take care of yourself.
2. Create a support system if you don’t have one.
You will need to have a support system. What does this mean? Well, it means surrounding yourself, your family, your child with people who are going to be positive influences in your lives. To help you adjust, talk to, get questions answered, watch your child, express your feelings without judgment, and advocate for you when needed. There is not just one way to make this happen. Surround yourself with your family or certain family members and friends who can be the positive influences you will need. Open up to them and express what you need from them. Be honest about your child’s diagnosis and their special needs. There are support groups you can attend locally with other parents looking for and needing the same support you need. There are also support groups online you can join where again they are in the same boat as you. This is where some research will come in handy. You can search for local agencies that offer services. This will be a very important step you need to take serious — no matter how strong you are we all need help from time to time.
3. Get organized.
This is another extremely important step you should take. It is going to be so easy to get overwhelmed with every aspect of your child’s diagnosis. You will have to look over all your child’s paperwork often to keep things straight, to remember appointments, and to do your research. This will come in handy through this journey, especially in the future when you get involved with different doctors, therapists, schools, agencies, evaluations, progress, and medications. You may need papers to receive services you apply for. It will be a timeline of events that you can easily look back through. Get a binder and put dividing tabs in it. You can make it as detailed as you want. I do suggest you do it in order of events by date. This will make your life a bit easier considering all that you will be juggling.
4. No one knows your child better than you.
So here you are, taking your child to specialists, doctors, and agencies. You put your trust in them because they are experts and have studied for many years to obtain all this information needed to treat your child. You need to be open-minded and listen to their medical advice on how to treat your child. You need to do your research and discuss options with doctors, family, and friends. In the end, this is your child, and you need to make the final decisions when it comes to their care.
No one knows your child better than you so if it doesn’t feel right, don’t do it just because an expert in their field says so.
5. Do your research on everything pertaining to your child’s diagnosis.
This is the only way you can make the right decisions for your child and family. There is so much information out there that you will need to know on treatment options, parenting techniques, medication, therapy, what exactly is their diagnosis, and why they behave in certain ways, different services available to them, their rights and the law. Don’t be afraid to ask question after question to all people involved with treating your child. They treat hundreds of children with special needs, but you only have one goal and that is to be your child’s voice to ensure that they receive the proper care, treatment, and services customized to them and their disorder.
6. Trust your instincts.
Autism spectrum disorder is not one disorder that everyone diagnosed with fits in to. It is a wide spectrum of similar symptoms relating to social skills, empathy, communication, sensory problems, emotional difficulties, behavioral issues, and speech and language. There are also different functioning levels in each child from mild to severe. Some children have multiple diagnosis on top of the autism. There is no quick fix so to speak. It all is individual to the child. You can’t put all autistic children in the same category and give them the same treatment. That is not how it works. You will be given the options and the doctors and experts’ advice, but in the end follow your instincts of what is best for your child.
And know that you are not alone. If you need support, resources can be found here.