Dear friend whose son is newly diagnosed with autism

First I want to say I love you. I love your son and all of your kids. You are a great mom and you will get through this. I, too, have sat in your exact spot. Shock. Disbelief. Guilt. Anger. I am sorry for you pain. I wish I could take it away. I know I can’t, but I can share some of the things I’ve learned and give you some advice I wish someone had given me.

I know the idea of autism is scary. I know it feels like your world has just spun off its axis. The very word feels like something you wish you’d never heard, let alone uttered across your lips. You feel like you want to take a shower and wash it all away. “Autism isn’t my boy.”

The label sucks. It feels dirty and accusatory. I hated it. The thought of your baby boy having autism feels like an insult. I remember feeling betrayed by the diagnosis. Like I didn’t know who Finn was at all. How could I not have seen it? Why didn’t someone tell me? I’d spent 3 1/2 years thinking I knew Finn and all of a sudden he was someone else.

Turns out, he wasn’t someone else. There was just a facet of him I hadn’t seen before.

I didn’t want the label. Or the IEP. Or the “special needs mom” title. I didn’t want it. It wasn’t part of my plan. It wasn’t who I was.

But it is. It’s who he is. It’s who I am. And some things aren’t up to me.

Much as I hated the diagnosis, I knew there was no turning back because, for us, ignoring “the label” meant going back to fitting a square peg into a round hole. I tried everything and nothing worked! Sticker charts. Time out. Consequences. Extreme praise. M&Ms. Watching “the Supernanny.” Reading every parenting book. Chat rooms. I was open to anything. My husband used to joke that I was following the “Parenting Book du jour.” What could I do? I was desperate! At least the label gave us a game plan. As confusing as it was, at least there was a reason for his behavior! The label helped us see that what Finn was doing wasn’t his fault. He wasn’t being diabolical or manipulative. He was trying to tell us something.

Thank God we heard him!

You are entitled to not believe it! I know I didn’t! Do you know how many times I did the M-CHAT (Modified Checklist for Autism in Toddlers) online before we got Finn a diagnosis? I thought getting Finn tested was just a formality… you know, to rule it out, not in!

You can get a second opinion if you want. If the person who diagnosed him didn’t do the Autism Diagnostic Observation Schedule (ADOS), you should certainly have that done. It is considered the “gold standard” in diagnosing autism. Finn had the ADOS done and I still didn’t believe it! “He was having a bad day. How can she expect him to answer her when she just pissed him off? She was wearing socks with thong sandals for God’s sake!”

If you can, you should try and get a “team diagnosis,” where a developmental pediatrician, occupational therapist, physical therapist and speech therapist all look at your child in one day. Then they all sit down and diagnose your child. It would give you the most accurate picture of his autism. But, if you already have the diagnosis, your insurance may not pay for a team diagnosis. And the waiting list for those kinds of appointments is generally about 6-12 months, so I’m going to forge ahead with some practical advice…

In the meantime, check out Autism Speaks’ Glossary of Terms. It is not comprehensive, but it explains many things children with autism experience and it’s a good start. It will help you understand what he does or doesn’t do. At the very least, it will give you some of the buzzwords to use when talking to doctors and therapists. I found something new that Finn does when I clicked on it to link it here! Even now I am still learning.

This isn’t your fault! There is no known cause of autism. You didn’t expose him to something that caused it. It didn’t happen at birth. He didn’t eat too many red M&Ms or hot dogs or non-organic foods. There is nothing you could’ve done to change things. Stop thinking that right now. It is not a productive place to be.

This is going to change you. I wish I could tell you that you will be the same on the other side of this, but it’s simply not true. It’s impossible. After the pain and confusion subsides, you will attack this with the vehemence of an angry bear. But there’s a gentle side, too. You will see the wonder in the minuscule and glory in the mundane. Because you realize what a gift even the simplest of things can be. Your life isn’t over. This is just the beginning of a new one. A richer one.

There was a time when I wanted to bury my head in the sand and never think the word autism again. My brain felt like it was shaking around inside my head and if I heard or thought of the word again I was going to explode! But I knew, deep down, that burying my head in the sand was only going to help me cope. What about Finn? I owed it to him to put on my big girl pants. I had to decide to be strong because, believe me, I wasn’t born this way.

You know your kid better than anyone! I realized that the Dr’s don’t know my kid better than I do. Neither does Autism Speaks or the Child Study Team or Autism for that matter. I KNOW MY KID. He wasn’t going to do every little thing the books and blogs say autistic kids do. His autism is as unique as he is. His diagnosis opened my eyes to who he is, but it didn’t define him. It didn’t change who he is, it just broadened my understanding of him.

Think of it in smaller chunks. Think of autism as an umbrella diagnosis that stands for a little bit of a lot of different things. Some diagnoses that can fall under this include: ADHD, Anxiety, Auditory Processing DisorderCommunication DisordersExecutive Function DisorderObsessive Compulsive Disorder (OCD), and Sensory Processing Disorder. When you break it down like that, it doesn’t seem so scary. Overwhelming? Yes. But it helped me to see all of what Finn’s challenges were. I could fully admit that Finn has a little bit those things, but it took me a little while to swallow the autism.

Make some phone calls. This part may seem overwhelming, but I promise you, this will be the most productive thing you can do! Call your insurance company and see if they have an “autism coordinator” or someone who can help you figure out your benefits.

  • You may have mental health benefits that will cover Applied Behavior Analysis (ABA) Therapy, which will help you understand why he does what he does and how to respond to it! Only about 20% of insurance companies cover ABA right now, but it’s worth looking into. Our ABA Therapist does Functional Communication Training with Finn and that has made unbelievable improvements in his behavior.
  • Get an Occupational Therapy evaluation. He may have sensory issues that are contributing to his behaviors. This will probably be the most revealing evaluation you can get. It was for us.
  • Get a Physical Therapy evaluation. He may have physical delays that can cause clumsiness or spatial insecurities.
  • Get a Speech evaluation. He may have speech delays (not just articulation. Also, see communication disorders above), but what they call “Pragmatic Language” delays. It involves his ability to use language in social situations and read non-verbal communication. A Speech Therapist may also help you learn to use PECS with him. Many children with autism are visual thinkers. You can’t just tell them something, you have to show it to them. PECS uses pictures instead of words. It works for both verbal and non-verbal kids. For us, we use it as a schedule to show Finn “what’s next” (a question he asks all day.) It helps ease his anxiety, too.

All of these evaluations will help you get a better picture of his challenges, instead of focusing on a label or a diagnosis. Every kid with autism doesn’t do everything “autistic kids do.” You need to know what YOUR kid does. That will tell you everything.

Don’t call the Child Study Team right away. Wait until you are in a better place with the diagnosis. Dealing with a child study team is a whole other ball of wax. Some of them are great. Some of them are… not so great. You want to have a better understanding of what he needs before you walk in there because there’s no “menu” of services and if you don’t know to ask for it, they won’t offer it. In the meantime, follow Wrightslaw on Facebook. They also have a website, blog and books (I especially love “From Emotions to Advocacy”). They are invaluable. If I had it all to do over again, I would’ve started out knowing our rights and going by the book (Pete Wright’s book, that is). Don’t assume the School District is going to give you what he needs. Don’t assume they know the law or will follow it. Don’t assume they have your best interests at heart. This is their job, but this is your life! It’s way too personal and emotionally charged. The IEP process is almost more overwhelming than understanding the diagnosis. That’s why I’m telling you, if you can hold off on contacting them, do it. You need to focus your energy right now.

Be patient with yourself. You don’t have to learn everything in one night (and you certainly aren’t going to!) There is a lot of information out there and not every piece of it is going to be helpful! Start with the Autism Speaks 100 Days Kit (they have a “tool kit” for Aspergers/ High Functioning Autism, too). Read them at least twice. The first time, you might not know exactly what applies to your son. Give it time. Read them again. You may not understand it all at first. You don’t have to. I’ll be here to help if you need it. When you’re ready, read this blog, “Welcome to the Club,” by Diary of a Mom. I know it’s hard right now to think that anything good will come of this, but I promise you, it will. This isn’t a “club” any of us planned to be in, but I’ve made some of the greatest friends here.

It’s ok to feel overwhelmed. And scared. And sad. And incredulous. And ashamed. And guilty. And angry. You are entitled to feel. Whatever. You. Feel. You will go through all 7 stages of grieving (believe me). You will get to “Hope,” I promise. And until then, I will have hope for you.

You don’t have to do it all. You are not “behind the 8 ball!” You don’t need to make any drastic changes right now. You will figure this out and it will get better, but for now take your time! I remember getting every book I could find at the library and reading feverishly, trying to absorb everything I could, so I could “fix” Finn. Looking back, I wasn’t really reading them anyway. I would read a few pages, think “it wasn’t Finn” and cry myself to sleep. I’d wake up the next morning and repeat. There’s no quick fix anyway and right now your family needs you to be ok. Finn’s diagnosis was almost two years ago and I am still learning something every day!

Find a support group. This doesn’t have to be a traditional support group, but rather a group of friends who have been through this. Seek out other parents to lean on. Their advice is invaluable (and so is their wine!) There are a lot of support pages on Facebook, if you’re not ready to go public. Check out this, this, this, this, this and this. (These are some of my favorites because they post things that are positive and helpful to the autism community. There are plenty of “autism sucks” bloggers and Facebookers out there, but I stay away from them.)

Don’t compare him to other autistic kids you know. I promise you will NEVER find a kid who looks or acts like yours. He is unique and special and sweet all on his own. Autism is a chameleon. It blends in to each person. I’ve heard it so much it’s cliched, but so true, “when you’ve met one person with autism, you’ve met one person with autism.” Find out what your kid’s autism looks like. That’s all that matters.

Autism is beautiful. I know I sound like Pollyanna right now and you probably want to punch me in the face, but you will see it. Once you accept the diagnosis (if it is true), you will see the beauty in autism. You won’t be able to separate the diagnosis from your child. And how could he be anything but beautiful? When you think of autism right now, you are thinking of “that kid down the street who has autism” or “Rainman” or a picture of autism you read in books. Autism will become very personal to you. You will see its uniqueness. You will find its gifts. You will champion its miracles. You will find its beauty.

052

I am sorry for your pain. I am here for you. I will listen to you whenever you want to talk. You can ramble on for hours about him. I will listen. I am proud of you (and honored) that you reached out to me.

Whether or not he has autism doesn’t change your love for him. I know you would go to the ends of the Earth for him. He is still the same little boy he was yesterday. Nothing has changed. He is still perfect.

You are stronger than you think you are.

Advertisements

26 thoughts on “Dear friend whose son is newly diagnosed with autism

  1. I’m sitting here stunned that I found this post. I am a brand new blogger and was clicking around to get the feel of other posts. I’m a special education assistant in a room of 9 children with moderate to severe autism. So, I understand autism, it’s individuality, it’s impact on a child, it’s impact on a family. Anyway, in my personal life I’ve known no one who was diagnosed autistic. Then, a few months ago, I began to notice autistic traits displayed by my niece’s 20-month-old son. She lives five hours away, but we keep in close contact through FB, where she frequently posts pictures and videos of her son. First I noticed the pictures of toy cars lined up across the living room floor, then I noticed she described how he went “beserk” if any of the toys were knocked out of line, then she posted a video of him standing and bouncing to a musical toy – I noticed at one point he bounced facing the wall for a good two minutes – his nose two inches from the wall. And then, she posted a valentine’s day video of him. He just babbled and didn’t say any words. So, my heart dropped and I asked her if he talked much. She said he USED to say his sister’s name and daddy but in the last few months he only says them when asked. He doesn’t ask for things, he takes the person’s hand over to what he wants. I advised her to ask her doctor about the speech issue – I never said the word autism. She has two teenagers, and she and her husband were so happy to have a son that I don’t think it entered their mind that anything could be wrong. He is literally adored.
    So, the pediatrician said he needed speech therapy and referred my niece’s son to an autism observation clinic. That was a few weeks ago, and she called me during work today. I missed the call, and since she NEVER calls, I’m frightened that she’s had some definitive news. Although I must say I think that even after the pediatrician referrals she wasn’t worried.
    Point being: I feel so grateful to you for laying the info. out like this. She will need someone who can help her, and now I can better do that, if, in fact, her son is autistic.
    So, thank you.

    • Thank you so much for sharing that with me. I’m glad you got something out of my post. A new diagnosis is so confusing and scary. People talk to you like you know what they are talking about (or as if they believe the diagnosis even though you haven’t accepted it yet!) Keep me updated! If I can help in anyway, I’d be happy to.

  2. You were such a great resource when we learned of G’s diagnosis and I appreciate this post so much. To me, he’s not defined by his autism. It’s what he is, not who he is. I look at his diagnosis as a blessing, something that helps teachers and others understand a little bit more about the WHY and so far, it’s been just that.

    He has his quirks, but really, don’t we all?

    • You were part of my reason for wanting to post this! The friend I posted this for is the third of my friends who has gone through this. I am hoping it empowers and provides clarity to what is an unbelievably confusing time! And, yes, we all certainly do have our quirks. Finn’s diagnosis has been my own journey of self discovery as well!

  3. Um….. I couldn’t stop crying…. I wish I had found this a year ago! But it still holds true no matter how far along we are on this ride. I don’t just “like” this, I LOVE it. Thanks for writing what I wish I could. I will be sharing this with new “autism moms”. Just beautiful.

    • Thank you so much for that! I wasn’t sure how it was going to be received. I feel like there are 2 schools of thought with a new diagnosis: those who feel vindicated and those who get the wind knocked out of them! I was definitely the latter! Please pass it along to whomever you think it will help. I am hoping it is practical advice for the “newly stunned!”

  4. Hi Shannon. Although we’ve never met I feel like I’ve known you forever through your extraordinary posts! I went to hs with Joey or shall I say Joseph. Lol. . I just wanted to let you know that you are a phenomenal mom. All your writings make it so clear that your love for Finn supersedes any fears you may have. You have embraced his autism instead of trying to change it!! That makes you such an incredible mom. I have two children and although they do not have autism I know that someday I’ll face something challenging like autism. We all will. You have made me realize that in the end our job is to love them unconditionally with all our might. They are perfect because God made them unique. He has blessed you with a sweet angel even more special than any other. I wish you and Joey the best of luck raising your beautiful family. Please keep writing. You’re an inspiration to us all. You truly define the word mom! God bless!

    • Thank you, Elizabeth! That is so kind of you to say! Yes, I believe we all will face our challenges. I’m hoping we are all stocked up over here, though! LOL! Thanks for reaching out and responding with so much love! I really appreciate it. Joe really had some great people in his life back in WNY who continue to love and support him (and consequently me) to this very day! It means the world!

  5. Shannon, I’m so happy your friend has you!!! And as you say so well, everything will be all right…for your friend and for all of us.

  6. Thank you for the lovely post. You have inspired me to schedule testing that I have been putting off for months. I thought if I loved him enough and did enough research I could handle it myself. Fix whatever was wrong. I just didn’t want to hear anything official because once you hear it there is no going back. After years of people telling me there is “something” wrong with my son I am ready to admit they may be right. No more excuses. If I continue to pretend that everything is OK he is the one that will suffer. As you said, time to put on my big girl pants. Thank you for waking me up and forcing me to get the ball rolling.

    • Wow. Thank you. I am glad it touched you in that way. Just know that being “different” isn’t wrong. Autism looks different on every person. There is nothing to be ashamed of. It’s always darkest before the light. Brighter times are ahead. Check back with me. I’d love to hear how things work out. Hopefully, my blog may help you along the way. I posted our “coming out” post. I reread it once in a while, just to see how I felt back then. I still didn’t grasp the full scope of it, but it may speak to you anyway. This is it: Good luck!

  7. Pingback: Dear friend whose son is newly diagnosed with autism | Lou Hamilton's Blog

  8. I just wanted to say thank you. My son was just diagnosed with ASD . It’s a very hard pull to swallow. It’s been five days sense his diagnosis and it fells like one really stupid long day. Anyway… You just nailed it. I so badly want to believe it’s not true. At the same time I’m ashamed of myself for thinking that my sweet lil boy is any different then he was last week. I hope the one day I will have the strength and insight that you do.

    • Judging by the time you left this comment, unless you aren’t in my time zone, you aren’t getting much sleep. I hope that you are finding sleep somehow. I know that “one really long stupid day” feeling. It gets better. Don’t listen to the people who scare you (the ones who want to convince you that there is a window of opportunity to help an ASD child). You will get your son the help he needs and you will (eventually) stop feeling like the days are running together. You can email me (shannoncostal@comcast.net) if you want to talk offline. I’d love to hear about your boy.

  9. my 20 month old son was diagnosed with ASD yesterday. this post just brought some much needed calmness to my soul. i felt like i could let go of all of the guilt and anger and just move on to trying to help and understand my baby boy now. thank you from the absolute bottom of my heart. YOU ARE A LIFESAVER 💜💜💜

    • Thank you so much for your comment. I’m so glad my post spoke to you. I know what it’s like to be where you are. It is such a process to wrap your brain around the “word.” And I wish it didn’t have to be! If I can do anything to help you, you can email me @ shannoncostal@comcast.net. I wish you and your baby all the best! You got this!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s