We have been on this Autism journey for about 18 months – 18 months since we first heard the words “your daughter shows many of the signs of Autism Spectrum Disorder”. It has been about 14 months since her official diagnosis. We measure our lives in BD and AD (Before Diagnosis and After Diagnosis). Honestly, I almost can’t remember a pre-autism diagnosis world right now since so much of our life revolves around therapies, appointments, funding, paperwork, school meetings, and phone calls about autism.
I still remember the day we first heard the word autism. Even though I suspected the diagnosis prior to the appointment, having a medical professional say the word out loud was life changing. Everything moved in slow motion and we were given pamphlets and websites to visit sent on our merry way – on a journey that we knew nothing about. Then, you have a series of nothing but questions – everything from how to help her in school, how to increase communication, and how to help her work through behaviours. Then you lie awake at night and think about the big questions – How will this affect her future? Will she follow a typical path in school? How will we change as a family? How can we help her? Will she need special care the rest of her life? After those questions you go into the deep dark feelings of anger, resentment, and guilt. You wonder why this happened to you, wondering why other families don’t have to deal with this, and grieving the parenting experience you thought you would have.
These are all normal – I truly believe that every newly diagnosed family goes through these emotions and experiences. After 18 months I am not an expert about everything related to autism, but there are some lessons and things that I have learned that I would like to share with newly diagnosed families.
- IT WILL BE OK. This is lesson number one. It seems completely overwhelming right now and you think you aren’t doing enough – but you are. There will be times that this journey will frustrate you – but just remember that your child is still your child and their diagnosis is words on a piece of paper. Use this to empower you – there will be good days and bad days but it will be ok – you will be ok.
- EDUCATE YOURSELF. Scour websites and information about Autism. I recommend looking in your community to see if there are any Autism groups or organizations to start. Note that these are NOT equal. There are a lot of quack sites that are preying on uneducated parents claiming they have a “cure” for autism. In Canada, some great websites are Autism Ontario or Autism Canada.
- THERE IS NOT ONE RIGHT WAY. Autism is a spectrum disorder, and how it affects your child will be differ in every case. You will need to figure out the best combination of therapies and activities for your unique amazing child. Just because something works for another family, doesn’t mean that it will work for you – but be open to it and listen to your gut if things don’t seem right. At the beginning, you will want to try everything, but you quickly learn that you have finite amounts of time and money and need to figure it out.
- YOU ARE THE EXPERT. You might not know everything about Autism, but you are the expert on your child. Do not be afraid to advocate for them and point out that there will be some things that won’t work – that is ok. As time goes on, you will become more comfortable in doing this – and you will know when to get your claws out or reign them in.
- IT IS OK TO RELY ON OTHERS. I have written about this before, but as a special needs parent you feel guilt for not trying to do everything yourself. You will do as much as you can of course, but do not feel guilty about not being a behavioural expert, or skilled in speech language therapy. It is ok to rely on the expertise of others because sometimes you just want to be a parent and not a therapist – and you shouldn’t feel guilty about that. It truly takes a village.
- YOUR CHILD WILL STILL GROW AND CHANGE. It might not be at the same speed as neurotypical children, but your child will learn new things and conquer skills that they previously didn’t know how to. You will still beam with pride with every new accomplishment. Your child is amazing, and happy and loving and needs you to be their parent and their biggest cheerleader.
- CELEBRATE THE SMALL STUFF. No matter how small – celebrate it because it means your child is making progress. Have they figured out their colours? Can they move through something with less prompting? Have they figured out how to put their shoes on? These are all amazing accomplishments – be proud!!
- FIND YOUR TRIBE. Not only your existing friends and family, but find other parents with children on the spectrum. Autism can be incredibly isolating sometimes because you feel like you are going through it alone. Find the group of parents through Facebook or parent support groups. These people will understand and let you vent, celebrate, and cry without any judgement. It is truly liberating.
- TAKE TIME FOR SELF CARE. This might mean scheduling date nights for you and your partner, making sure you get workouts in, getting a massage, etc. You cannot pour from an empty cup – and let me tell you Autism can be very demanding – and there will be times that it completely takes over. But, don’t let yourself become your child’s diagnosis. Go on a date with your spouse/partner and try not talking about autism – have a girls night – go do a workout. It is ok to make yourself a priority some days. Don’t feel guilty about it.
- LASTLY, AUTISM IS WHAT MAKES YOUR CHILD HER/HIM. Autism is a part of my daughter, and part of what makes her who she is. There are times it makes things difficult for her, but there are also gifts if you look for them. If your child didn’t have autism – they wouldn’t be them. The challenge lies in navigating a world that isn’t geared towards them – and that is not their fault. You will learn more from your child along this journey than any other resource. They will amaze you every day and you will learn to be grateful for the experience.
I am be no means an expert, and I am still at the beginning of the journey, but these are a few things that I have learned which help our family deal with Autism in our daily lives. There are good days and bad days, there are days that you will think you are making tons of progress, and there will be others where skills are regressed. Be gentle on yourself – you are learning too, and there will be successes and mistakes. On thing will never change though – that there is a little person who thinks the world of you, and as long as you are together – it will be ok.