My son’s autism diagnosis happened six years ago this spring. Thankfully during that time I have grown a lot and learned so much. I didn’t handle the lead up to the diagnosis well. It was a trying time, but now I can appreciate that it helped me look inward and was a catalyst for positive change within myself.
When an autism diagnosis was difficult for me to accept, I went through a lot of different feelings. I felt inadequate for missing the signs of autism. Like a failure for not asking for help on my son’s behalf sooner. A bad mom because I loved my son, but didn’t want to face that autism was a contributing factor to his personality.
It’s Good To Feel Your Feelings
Sometimes we get stuck in a positivity loop, grasping for uplifting mantras and “everything happens for a reason” rhetoric. No matter what you’re feeling — it’s valid. Sadness, confusion, frustration, anger. All of these things are completely normal to feel, and you don’t have to justify them to anyone. The best thing to do is accept the feelings and move through them. Trying to push them down will probably make them pop up later to be dealt with then.
“What we resist persists”. Getting any kind of diagnosis in your family sets you on a new trajectory in life that you cannot plan for. If you try to gloss over this unexpected change, you’re likely going to have a breakdown somewhere along the way. So when you feel a wave of grief, hope, disappointment, awe, or uncertainty, ride that wave. Whether your feelings are positive or negative, they will all pass. Time moves forward and the world goes on.
You Can Feel Conflicting Feelings
One of the toughest parts of navigating my son’s autism diagnosis initially was the mix of emotions that came with it. Sadness because this would mean a lot of challenges for him, but relief because he had a supportive family and community. Anger because of the diagnosis, but encouragement because of how much growth he was constantly showing. Acceptance for him, but resentment towards the need to have him “labeled”.
Remind yourself that it can be both. You have never, nor will ever, stop loving your child. You’ll never stop seeing changes and growth in them. There can be times when you’re encouraged by the growth but disappointed that they’re not keeping up with their siblings or peers. There can be times of immense gratitude for a healthy child, but frustration that the world isn’t made for them. You are human and life is not binary — regardless of contradictions, your feelings are still valid.
Trust Your Instincts
If you’re learning about autism for the first time, all the information can be overwhelming. I felt so ignorant of what the signs of autism were, and what the long term outlook would be. I did a lot of searching outside of myself to figure out what the right next steps were. While working with therapists that fit in with your family is crucial, don’t count yourself out! No one knows your child better than you do, and no one is more invested in helping them succeed than you are.
Science is always changing, and one day the cutting edge research we have now could potentially be debunked and will definitely be improved. If something doesn’t feel right for your child, don’t do it. Researchers have incredibly valuable insights, but they don’t live with your child and see them the way you do. Don’t be afraid to challenge something if it’s not sitting well with you — even if you don’t feel like an expert, you are the best expert on your child.
You’re Going To Find Support
An autism diagnosis used to be a rare thing, but now it’s a lot more mainstream and better served. While there are still a lot of flaws in the system and accessing support can be tough, it is out there. At a minimum, you’ll be able to find a lot of good information online (as long as it’s approached through a critical thinking lens). Hopefully, you’ll get connected to therapies in your area that are a good fit for your family.
Thanks to so many excellent therapists and case workers, our family has been uplifted and seen many successes over the last six years. But I wish I would have known that I needed help on a personal level too. Eventually, I sought out therapy for myself as well but I could have benefitted from it much sooner. Don’t lose sight of yourself. Parenting is tough and burnout will happen. It’s a cliche for a reason–you can’t pour from an empty cup. Be it a therapist, a respite worker, your family stepping up to help, or accepting offers to cook or clean for you–say yes! It makes a difference.
There’s Never An End Point
At the outset of our son’s autism diagnosis, I was naive to think that we would do some therapy that would get him “back on track”. I definitely had fantasies of him catching up to, and in some areas, outpacing his peers. That we would eventually forget about autism and the diagnosis altogether. It’s honestly hard for me to admit I ever felt that way. I’m happy to say I no longer think that way or desire that outcome.
Autism will forever be a part of our lives. It doesn’t define who our son is, but it is an important part of who he is. Diversity is one of the best parts of our world. Getting to understand neurodiversity from a first hand perspective, and watching the way my son thinks has been an amazing experience. Not all brains are the same, but we will always benefit from unique outlooks and approaches to the world.
This Won’t Break Your Special Bond
Before his autism diagnosis, I was really close with my son. We had a very stereotypical mother and son bond that made others envious! We have always been very connected, and when I read about autism online I thought that wouldn’t be possible. But thankfully not everything you read online is true! After his autism diagnosis, we remain extremely close, and my husband often makes the comment that it’s like we can read each other’s minds.
Autism has a social stigma around it that suggests autistic people do not want to be close to others. While the bond is different between all of my kids and me, it is very strong with my autistic son regardless of what the research says. If you feel bonded to your child and worry that autism will “take that away” — don’t worry about it at all! The love and acceptance you show them will shine through in your relationship and that special bond will remain for life.