After fighting for our son’s diagnosis and then fighting an entire school year for the district to accept and validate our son’s Autism, we have succeeded! The last 9 months have been a roller-coaster: researching symptoms, gathering as much information as we could about the Spectrum, searching for blogs and articles from other parents, and just plain ol’ trial-and-error. Even though it has been a crazy (almost) year, there is one thing I am particularly relieved about.
The fact that just about everyone in the family accepted Elijah’s diagnosis.
We had to explain what High-Functioning Autism (just a few months ago, it was technically Asperger’s) really was and how it affected Elijah; for some it took a little bit more information than others. But generally, they accepted his diagnosis and have been very supportive. We are lucky to have such a great support system (even though they are scattered all over the U.S.)! We know of some people, though, who are not as fortunate as us.
Their little ones are also on the Spectrum, one has moderate ASD and the other also has high-functioning ASD. But their family members and friends are not necessarily supportive of the children. One set of parents doesn’t want to acknowledge the Autism diagnosis at all. The parents of the other child accept the diagnosis, but don’t really want to announce it to the whole world.
What do you do when your family doesn’t want to accept the diagnosis?
Well, for starters, I am not sure if there really IS much you can do to convince them of the diagnosis. On the other hand, it could be a great opportunity to learn as much about Autism as you can and use your new knowledge and understanding to explain ASD to your family and friends.
You don’t need to announce to the world that your child has Autism. Don’t put that extra pressure and stress of having to explain to complete strangers what Autism is and why you are NOT a bad parent, when it is already difficult enough to explain it to your family and friends.
Do not place blame on yourself! Autism does not stem from bad parenting!
Know that Autism isn’t a death sentence. Are there different levels of severity? Yes, but that’s why it is important to learn as much as you can about it. Just remember not to overdo it, because all your research means nothing to your child if you can’t give her love. I am working on this myself. I like to over-analyze things and over-research topics, which takes a lot of time away that I could be spending with Elijah. There really is no better way to learn than to engage with your little one. Try it! 🙂 This is actually one of my goals for this summer.
Understand that family and friends may look at ‘disabilities’ in a negative light.
Mental and Neuro health is associated with all kinds of stigma. For some people, it seems as though, struggling with something that cannot be physically measured or seen cannot exist. It’s all in that person’s head. Or, they’ll grow out of it. Or, it’s not as bad this person’s disability.
All of these phrases, and more, may be said by those who do not want to accept the diagnosis. That’s fine. For some, an Autism diagnosis is hard to handle. It could just take time. Allow your family and friends to just take their time when telling them about the diagnosis. Would it help anyone, especially your little one, if arguments broke out simply because a few people may not accept it at this very moment?
Try to be as understanding of their hesitation to accept Autism, as you can.
Know that you CAN set boundaries.
You are still her parent/guardian. You can set boundaries for your child. Did you read that sensory play may help your child with autism? Go right ahead and let her play in the sand! Did you read that giving your child a calm-down area for those times when she builds an (invisible) indestructible wall around herself and won’t let anyone in to comfort her? Go ahead and give her a calm-down area! Regardless of what other people may say on how you should raise your child, especially a child on the spectrum, YOU are still their parent/guardian. YOU can set boundaries that allow you to raise your child and give her the best opportunities to grow up and live a fulfilling life.
You’ve got this!
Be prepared to hear all kinds of myths and misconceptions and become an advocate.
Autism, much like many other developmental disorders, is cloaked in all kinds of myths and misconceptions. (Check out my 3-part series on Autism Autism myths and misconceptions.) Be prepared to hear them all the time from here on out. I will be honest with you, it sucks to have to listen to these myths; especially when you know that none of it is true and no matter how many times you try to explain and debunk the myth, they keep coming back. Seriously, these myths are like weeds! You finally get rid of one and two more pop up somewhere else!
This means that not only are you your child’s parent, you are now their advocate, too! There will always be nay-Sayers, but you can try and give them the best information at hand and hope that maybe one day they will come around.
You may get knocked down. You may feel defeated at times. You may feel like you’re just banging your head against the wall with no results. Sometimes, you may feel like it’s you against the rest of the world. But you can do it! Try and find other parents with autistic children. With 1 in every 50 children believed to be on the spectrum, the odds are fairly good when trying to find other parents who may be going through the same roller-coaster ride you are right now. Also, check out these 8 tips to prevent Caregiver burnout!
In the end, nothing else matters.
Your child will come to you for support, not the rest of the world. She will seek comfort from you. She will learn from you. You are her support system. Would it be easier if you didn’t have to fight the acceptance of the rest of the world? I’m sure it would be a hell of a lot easier! But I am a firm believer in the idea that we are only given what we can handle. For some reason, the universe picked you to be the parent/guardian of a precious young life. Nothing else matters. It will all fall into place, some day!
You’ve got this!
Disclaimer: Everything I share is solely based on my personal experience and is for informational purposes only. This post contains affiliate links. For more information, please view my disclosure policy.