8 Things I Want Parents of Newly Diagnosed Autistic Kids To Know
BY DYAN ROBSON, AND NEXT COMES L
Photo © dubova/123RF
Apr 4, 2018
Getting a diagnosis for your child may seem like a pretty overwhelming experience, and it can be.
If your experience was anything like ours, then you were probably handed a piece of paper with the official diagnosis and then sent on your merry way. No helpful advice, no pointers on what to do next, just a single piece of paper and a promise of a full report in the mail at a later date.
If you were really lucky, then maybe they gave you some helpful handouts or some verbal advice.
Be sure to also read: 8 Things You Should Never Assume About Autism
While I was expecting the autism diagnosis, diagnoses like hyperlexia and hypernumeracy — ones which I was not expecting — were also given to us. These were terms I had never even heard until that day! I could have used some handouts, resources, advice — anything, really — to help me understand what those labels meant.
Maybe you currently find yourself in the same boat, or maybe you just need some reassurance and some guidance on what to do next.
Hopefully this list below will provide some insight.
1. Take time to process
When your child receives a diagnosis, you'll experience a wide range of emotions. That's normal and perfectly OK. While you might have been expecting this diagnosis for a long time, you still need to give yourself some time to process what that diagnosis or label means. Especially if it is a diagnosis or label that you weren't expecting or aren't familiar with.
2. Do your research!
I cannot emphasize this enough. You need to learn everything you can about your child's diagnosis and what therapy options are available, if therapy is indeed something you want to explore. You need to read the pros and cons about the different therapies so you can make the best informed decision for your child. (Maybe you don't even want to explore therapies — that's fine too!)
3. A diagnosis or label does not have to be a negative thing
Unfortunately, some diagnostic labels come with a lot of negative baggage. Who knows why, but here's the thing: a label is what you make it out to be. It does not have to be negative at all. To me, a diagnosis opens up the door to funding, support and a variety of other things your child and family may need.
4. You're going to come across a lot of bad advice and misinformation
You might even think my advice here is garbage and that is fine, but I'm going to come back to my second point from earlier about doing your research. If someone tells you about the latest and greatest therapy or whatever, then do the research yourself. Use that research to determine what is and what is not worth pursuing. Trust me, there is a lot of bad advice and misinformation out there.
5. Find a support group
Raising a child, regardless of whether or not they have a diagnosis, is not always sunshine, rainbows and unicorns.
There will be hard days and I'm not going to sugar coat that one bit. It's important to have someone you can talk to on those days, someone who can listen to you or offer support based on their experiences.
Your support group doesn't have to consist of someone else raising a child with the same diagnosis. Nor does it have to be a local, in-person type of support group. An online support group or friend can be extremely valuable to you as well. However, someone who has experience dealing with similar diagnoses may be helpful to you on those particularly challenging days.
More recommended reading: 19 Questions To Ask To Help Decide Which Therapies Are Right For Your Autistic Child
6. Connect with others who have the same diagnosis
Since my son is autistic, I like to read a lot of articles written by autistic adults. I love to see their insights into what being autistic is like, since I have zero idea myself. I can read and research all I want, but I will never have the first-hand experience of being autistic, whereas they do.
That's why I think it is important to have friends who do have the same diagnosis as my child. Or at the bare minimum, at least read writings from people with the same diagnosis. They can provide an incredible amount of information and insight that no other professional, parent or expert can.
7. Be prepared to advocate
When your child gets diagnosed, things don't automatically get easier. You are likely going to have to advocate hard for your child everywhere you go. That's why it is important to connect with others who have the same diagnosis and research everything. The more educated you are about the diagnosis, the better it will be for advocating for your child's needs.
8. Accept your child for who they are
Finally, accept your child for who they are. The diagnosis does not change them. The therapy options you use should not seek to change them either. Simply embrace your child for who they are, because they are pretty amazing.
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