5 things to tell every parent right after their child is diagnosed

Learn, Learn, Learn, Learn, Learn!!

What? Oh, you expected an intro and information and conclusion and so forth… right.

Recently AutismSpeaks asked on Facebook and Twitter what 5 things that people would tell parents right after their child was diagnosed. Even though there was hundreds of really great answers, I found that you could boil them all down into one fundamental response… “learn”. Every answer involved the parents having to learn one thing or another!

So having boiled it down to one answer, which encompasses them all but is still a little too vague entirely on it’s own, I will broaden it out to answer the original question: what 5 things would you tell a parent right after their child is diagnosed with Autism?

1. Learn what Autism is.

LearnThe scariest part of getting the diagnosis is that most of us really don’t know what Autism actually is at the time and so our minds start racing about all the things that must be wrong with our children and all the ways their future is going to be impacted. We start going through our memory files trying to think of every single thing we’ve ever learned or heard about relating to Autism.

The only way to really conquer a fear of the unknown is to learn about it. Don’t bother yourself with causes and cures, just learn what it is. Talk to your doctors and also hit the information super highway to learn how Autism affects people. As you learn the signs, symptoms and effects it has, you’ll begin to recognize them in your child. It’s the first step to learning how those symptoms are treated.

2. Learn What Services Are Available To You

This has to be your second step because early intervention is the key to helping your child overcome Autism and live a productive life. Unfortunately, not all treatments/therapies are covered for you, not all are free, not all of them work, not all of them available to all people and many, especially the good ones, have a rather long wait list.

The sooner you find the best places to go for help, the sooner you can get in the door to talk to them. It may be months or even years down the road so you have to find these places ASAP.

Also, some places will take you but not until after you’re approved for funding, or some other stipulation and again, applying right away means you get the paperwork done faster.

3. Learn the treatments, therapies, diets, etc. yourself

If you’ve done #1 and #2, you’ll find yourself quickly thrown into terminology hell with abbreviations thrown at you from every direction, including ABA, IBI, GFCF, IEP and on and on. You’ll learn them as you go, don’t stress out over it.

It’s very important to remember to take notes all along the way!

Some of these things will work brilliantly for your child and some will not. The very nature of Autism is that no one solution works for everyone.  So you may need to keep track of the results of each attempt so that you can tell what is and what isn’t working.

More so than that, many therapies are effective but so very limited. That is to say, you may have speech therapy appointments once a week which help a lot, but how much more would it help if it was daily instead of weekly??

Ask for notes and information on how you can continue the work at home. Ask for books or copies of what they work on that week so that you can reinforce the work.

If it’s a nutritionist, ask for a list of essential foods to try for, ask for suggestions on how to get a picky eater to eat the things they have to instead of just what they want to.

Never just expect a professional to do all of the work for you. They are professionals but they can only do so much because it’s not just your child that needs them. However you are not them. You can devote your time to one child far better than they can. But you’ll need the information and tools to do it.

Also, maybe one day you’ll meet another parent along the way that is really struggling and can’t get the same help you did, and you’ll have all that information for them to be able to use if they have to!

4. Learn where the support is.

The one good thing about Autism being everywhere is that there are so many people out there going through similar situations. Someone you are going to deal with will likely have some information on how to get involved with a support group, whether it’s your doctors, therapists, teachers, nutritionists… what ever, keep asking them all if they know of any.

Do not be shy.

Children with Autism are extremely diverse and you’re very likely to find parents that have children that are extremely low functioning, some that are high functioning, some that have had made great progress in getting their children developing and even some poor parents that have had their child regress.

They all have information to share and support to give. And they all have had to start at the same place… scared of the unknown. So don’t feel you don’t belong because you have nothing to share yet. You will, in time.

Also, remember that the Internet is there to help out. It can be daunting at times, all these people from all over the world that you don’t know but they’re real people and will help you just as much as a person face to face can. In fact, you will likely find a much larger support group online since you literally have the whole world at your finger tips. Twitter and Facebook groups/pages are a great place to start but there are also many forums and such to find.

5. Learn to be a super hero

That sounds a little strange but when you think about it, a super hero is compassionate, patient, strong, capable of doing amazing feats… that’s going to be you. In time.

I used to enjoy reading comic books, especially the early stage comic books where the hero has to learn what it takes to be a hero… and I find that it’s very similar to what you’re going to go through.

You’re going to learn to be far more patient than you ever thought you could be. You’re going to learn that all those children you thought were being bad actually weren’t. That they really wanted to be good kids. You’re going to learn that all those “weird” people that seem extremely socially awkward really aren’t that weird after all. You’re going to stand up and make sure that people are treated far better than they have been, when before you might have let it go or just said something without getting too involved.

On top of all that, unlike most parents that are forced to become doctors, psychiatrists, chauffeurs, banks and so forth, you’re also going to have to become a researcher, scientist, psychologist, therapist, nutritionist, supporter, event manager and even more.

It sounds pretty daunting actually, but the good news is that even though it does happen pretty fast, it’s still not over night. You’ll tackle each step as it comes along the way.

But in the end, so long as you never give up and you keep in mind who it is that you’re doing it for… when your child grows up and becomes capable of far more than what people told you they could do way back when they were first diagnosed… you’ll be a super hero.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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9 Responses to 5 things to tell every parent right after their child is diagnosed

  1. Susan Walton December 8, 2010 at 3:37 pm #

    Pressure, pressure, pressure. You can be sure that a parent with a new diagnosis is already getting plenty of it. I say tell them that even though their life is about to become full of new and unpleasant stuff (like the learning, learning, learning + therapy + insurance fighting + education advocacy, etc etc) that it is very important not to give up on family joy and having fun.

    No matter how busy you become, don’t be too busy to put it all aside and play with your child. Have fun with your kids, have fun with your family. It will get you through the rest.

  2. Dani G December 8, 2010 at 4:33 pm #

    Well done, SD! Sharing this…

  3. Big Daddy December 8, 2010 at 4:52 pm #

    I’d add one more, (6) Learn to accept. Accept your child for who he/she is. This doesn’t mean giving up and not pursuing every available therapy. It just means that once you accept your child for who he/she is, life gets immeasurably better for the whole family.

    Great post Stuart.

  4. Lynn December 8, 2010 at 5:20 pm #

    I’m still not nearly at the super-hero stage, so I guess the only thing that I would add is that it could take years before you reach that status!

    This post is awesome…I would have loved to have read something like this when I was first being thrown into this new world.

  5. Stuart Duncan December 8, 2010 at 6:59 pm #

    Thanks guys!

  6. wei yu December 9, 2010 at 3:34 pm #

    Stuart,

    I am on the stage of shocked when the psychologist say that my daughter might have light symptoms of autism. Now I start to accept. Thanks for sharing your insight, it really make me feel better!

    Since I was just thrown to this new complex world, can I ask you some questions:
    1. Do you think I need a concrete diagnose to help my daughter better?

    2. where can I have her diagnosed? Do you have any doctor to recommend?

    Thank you again for your posting!

  7. Stuart Duncan December 10, 2010 at 2:47 pm #

    wei yu,

    It’s difficult to give advice as everyone in the world has different levels of services available to them.

    However, I can say that if you want to move forward, an official diagnosis will go a long way. You might be able to get by without it with some people but you’ll hit a lot of roadblocks. They’ll want to see official paperwork.

    As for having her diagnosed, again, that depends on where you are. Your doctor likely won’t be able to do it but they should be able to refer you to someone that can. That’s how I found the place to take my son.

  8. The Domestic Goddess December 15, 2010 at 3:40 pm #

    Well said. Thank you.

  9. cassie April 5, 2011 at 7:46 pm #

    my cousin Bradley young has autism and he is one of the ones that is not like the others he laughs and smiles and other things he just don’t like to be touched or eat regualry food only fast food

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