My advice for parents that have just received their child’s autism diagnosis

One of the more common questions I get from people that give seminars, write journalism columns or otherwise somehow speak to many people at once is, “what advice would I give to parents that have just had their child diagnosed with autism?”

Here it is, in 4 parts.

1. Be selfless

When the doctor says those 3 scary little words “Autism Spectrum Disorder”, your heart sinks. No matter how positive you are, no matter how optimistic and no matter what great things you’ve heard about autism… it’s a heavy weight to bear.

In that instant, all of our hopes and dreams for our child are lost. We see a little human being with all of our visions of the future beyond their grasp. We see a child that will never be all of the things we thought they could be.

The thing is, those are our hopes. They are our dreams. They are our visions of the future. They are what we think that child should grow up to be. Us… us… US.

Letting go of that is hard. Some parents are never able to let that go.

But you have to realize, that’s your selfish side speaking. And I’m not saying that it’s not ok. It’s perfectly understandable and acceptable to be selfish where it pertains to your child. We all want what’s best for our children. We all want our children to reach for the stars and beyond.

But, you see, they will reach for the stars. It’ll just be in a different way.

They might not grow up to be like mom or dad and they might not even grow up to do all the other cool things you’ve imagined they could do but what they do decide to do, will be amazing.

They might not be your dreams or what you envisioned but, if you learn to let go of that and support your child in their dreams, you’ll find that nothing was ever truly lost.

You may be saying, “that’s all well and good for children that progress well and go to school and can manage on their own but my child will never have that”, it is not my intention to dismiss your burden. And all of the things I’m saying here will still apply. It will just be even harder still. And to you, I’d like to address this further in the next part…

2. Take stock in what you have

Sometimes I meet parents that are just so dark. They feel like they’ve lost everything and that their child was lost to them. They really believe that autism has stolen their child and ruined their future. And it hurts. It hurts me because no one should ever have to feel that way. And there’s nothing I can say or do that will help them.

But maybe, if a parent who is on the path towards feeling that way can be reached out too, perhaps those feelings can be prevented or avoided.

I’d like to tell you about my visits to Sick Kids Hospital with my son. One time for surgery and one time for allergy testing.

Walking through a place like that, you see children without hair and looking very pale and weak. You see children missing limbs or even an eye. You see children that are unable to see, hear and even those that are unable to move.

The hardest, I think, is seeing parents that are holding each other, crying so hard that in one moment are crying out louder than you’ve ever heard and in the next moment, crying so hard that they can’t even make a sound.

They moved into the hospital to be with their child in those final months, sometimes years. They know real loss. They’ve lost their house and jobs. They’ve lost the lives they once knew because for the time they’ve been in there, life has moved on without them.

But their child was worth it. For as short as their life was, it was a life. A beautiful and wonderful life and that life deserved to be loved. That child struggled for every day that they could.

For those parents, it was hard. Very hard. Harder than I could ever imagine it being and will probably, hopefully, never truly know.

But being there was worth it.

The reason I’m saying this is that, whether your child has autism or not, your child is right there, in front of you and your child needs you to be there with them.

Don’t be off fighting your battles or mourning your losses. Instead, move in to their room and be there with them.

Yes, you could take away from this story that things could always be worse or that they could always be better but that’s not what I’m trying to tell you. Instead, do as those parents did, do as they wish they could continue doing right now.

Take stock in what you have and live it. Your child has autism. It’s not a death sentence, it’s not an ending. Their life will be different than what you expected and it might even get really hard, but your child is right there wanting you to be a part of it.

3. Support is where you give it

It might not seem like it at first, when you know so little about autism or the struggles that it will bring, but your experiences are already and will prove to be quite valuable.

Every day, people are sharing their stories online and in support groups and one day, if you’re willing, that could be you.

Right now, someone is wanting to hear about the process you had to go through to get the diagnosis complete. Someone is wanting to hear about how you are feeling right now. Right now, someone is wanting to hear that they’re simply not alone.

If you are willing to reach out, even just a little bit, people just like you will be wanting to reach back. But if you close yourself off and bury yourself in that feeling of being so very alone, which we all feel (it’s not just you), you’ll miss all of those shared stories and all of those shared experiences. That one smiling face or reassuring word that you needed at just the right time will be missed unless you are willing to first step out and offer a warm smile too.

Autism is so very different from person to person, family to family, life to life but at the same time, we all share something so common and so fundamental that we already have this bond that we only need build stronger… and that’s our children. Our children need us.

What more reason do we need to support each other?

Unconditional love4. Love unconditionally

Whether your child has autism or not, can remember Pi to a thousand places or bangs their head against the wall, will go on to big and successful things or live out their days in a care facility…. no matter what, you must love your child unconditionally.

Many people say it as just a figure of speech or, while understanding it’s meaning, don’t really take into account the real scale of it.

Loving unconditionally does not mean that you love your child despite autism. Loving unconditionally means that you love your child with autism.

That no matter what your child does have, doesn’t have, does do, doesn’t do, will become, won’t become, who they were, who they were not, none of it matters, not one piece of any of it will ever take away from who your child is or the love you have for them.

You don’t get to love your child except for the part of them you don’t like. That’s not how “unconditionally” works.

When you fall in love with your true love, your soul mate, your bride or groom to be for the rest of your life, you accept them at their best and their worst, they’re best features and even their faults. You love them for who they are and wouldn’t change a thing.

The same thing applies, even more so, for your child.

Love your child for who they are, not for who they are even though you wish they could have been someone else, or someone more. Love your child for what they can do, right now, not for what they can do even though you wish they could do more.

Love your child. Period. Just love your child. Your child is perfect because your child is your child.

One day, maybe not today and maybe not tomorrow but one day, you’ll look back and realize just how much of a difference that really makes. It may seem like such a trivial thing at the time but it’s not.

One day, your child will look back and will know that they were never meant to feel like less than they should be. They will never feel like a disappointment in your eyes. Not even a part of them. They will never feel like they were the cause for your lost hopes and dreams.

What you do today, by truly loving unconditionally, will be your autistic child’s source of strength in years to come.

Do you see how important that is? Do you see how powerful that is?

What I’m saying is, without true, real unconditional love, one day, your child will believe less in themselves than they should, than they really need to, because they’ll look back on all the times you were disappointed in how they were less than they should be, less than you wanted them to be. And they’ll doubt themselves. They’ll feel what you felt.

And it won’t be the autism that holds them back, it will be because of the flaws and faults you saw in them that whole time. They’ll believe it because you believed it and it will stop them from achieving their true potential.

I know, if your child was just diagnosed, that’s a lot to take in and it’s even harder to do. Chances are it will take time and even though it seems like a roller coaster of a ride, you do have time.

Just keep it in mind. Loving your child, unconditionally, truly unconditionally, could be what makes the biggest difference in their life. Not the autism or any other struggles that autism can bring.

Your love. It’s just that powerful.

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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29 Responses to My advice for parents that have just received their child’s autism diagnosis

  1. Dylans Mommy July 23, 2012 at 9:28 pm #

    This is truly, without a doubt, the most beautiful post I have ever read. Thank you.

    • Stuart Duncan July 23, 2012 at 9:50 pm #

      Wow, thank you for that. What a wonderful compliment!

  2. Peter Flom July 24, 2012 at 8:07 am #

    This is all excellent advice.
    I’d add one more thing: Your child didn’t change when you got the diagnosis.

    • Stuart Duncan July 24, 2012 at 1:35 pm #

      Indeed. Many people do fail to recognize that.

  3. bluecontra1 July 24, 2012 at 12:16 pm #

    Stuart, as a Dad raising a boy with Aspergers, I can tell you that this article hit me square in the jaw just within the first few sentences. Thank you for sharing what so many have trouble saying out loud.

  4. Jen July 25, 2012 at 3:51 pm #

    As a single mother of a child with low functioning autism (or is it called needing substantial care now?), I can tell you, that sounds like a great post when a child is first diagnosed. Things that are quite easy to remember become much more difficult when they are 15, violent, a threat to your other children, and no one in the state you live in will help you other than “trying to get him one more respite weekend.”

    My (what I feel is more realistic) advice…..get therapy ASAP. Therapy for the child, therapy for the parents individually, marriage therapy, whatever therapy you can find. Oh and maybe a request from your own doc for some type of anti-anxiety medication. Because after trying about 12 to 17 meds for my son, calling every agency in the state, and STILL having to be scared of what my child may (or may not do) to me while I sleep…..I wish the doctors would’ve saved the whole “he’s still the same boy and it will all be just fine” BS, were a little more realistic about his future, and just gave ME a ‘scrip for whatever would help MY sanity.

    Of course stating the obvious….I’ve tried all your suggestions. And will continue to. And I still of course love my child and recognize that he can’t help what he is dealing with. However, when I try to just “be” with him, he screams at me….uncontrollably. Sometimes kicks. I thought getting him a service animal would help. We had to get rid of him when my son wouldn’t stop peeing on him. My son usually spends from 6 am to anywheres from 9 pm to 4 AM screaming, yelling, kicking and humming at the top of his lungs. So another realistic piece of advice….invest in earplugs early.

    Take stock in what you have? I have NOTHING. No life, no friends (couldn’t deal with me constantly trying to figure out if my son could “handle it” anytime they attempted to make plans), no marriage (husband couldn’t deal with a son that isn’t “normal”), no ability to leave the house except for work (which I’m on the verge of being fired for all the time due to absenteeism due to son’s behavior) and son’s therapy appointments. He’s now too big and too strong to handle, although we used to very much enjoy the beach. Another piece of realistic advice…..do what you can early…as much as you can. Because if your marriage fails (which so many of them do when dealing with special needs kids), and the mother is the one with physical custody (again…not uncommon), there will likely be a time where your child may be too big for you to “handle” in public on your own. So do what you can WHILE you can.

    Oh, and respite…..one weekend a month….which allows me to do nothing since I miss so much work time due to son that I can’t afford a “vacation” even for a weekend when the ability is there. Still a godsend. But one respite weekend a month is my state’s version of “making it all better.” Laughable.

    But again, nice feel good “it will all be ok” article.

    • 702shooter July 25, 2012 at 5:33 pm #

      Personally, I loved this article. What I like the most is how honest, yet positive, Stuart is.

      I understand that your comment comes from 15 years of experience and there’s definitely something to be said for that…BUT….The words you have chosen to get your point across paint you as a very bitter person. A person who doesn’t have the unconditional love being discussed above.

      Just my humble opinion.

      • Jen July 26, 2012 at 10:31 am #

        Bitter because I’m being realistic instead of sugar coating what really goes on when a child with classic autism ages? Its REALITY. Reality IS sometimes a bitter pill to swallow, but I’d rather be realistic than listen to another sugar coated version of what REALLY goes on day to day with a teenager with classic autism. And your statement about my love for my child (questioning it) is ignorant and ridiculous.

        Try getting real 702. Having a child that is ill, whether its a child with a condition like autism, or something different (and possibly more severe/worse) DOES bring out negative feelings and even bitterness at times….AT THE SITUATION…not at the child. And tell Stuart to get back with me in 10 years and see if he ever has even a MOMENT of bitterness lol. I’m so sick of being accused of being bitter or not loving my child just because I am honest and open about how difficult and hard to handle he is. I feel its what more people SHOULD be told. When my son was diagnosed it was all “oh he’ll be fine with sugardrops and rainbows,” until I met a doctor that HAD a child with classic autism. His advice was much more realistic and probably “bitter” according to 702 lol.

        And I agree with Gavin, good article for those on the “higher end of the spectrum.” This “spectrum” has been so clouded now. My child with classic autism looks and behaves NOTHING like a child with “high functioning autism” or “aspergers.” They are so far apart they shouldn’t even BE on the same spectrum!

        • Sunshine August 3, 2012 at 1:42 pm #

          See, publicly stating that your life is totally ruined because of your son goes beyond being honest. I agree with you on a few points- there are ACTUAL actions one has to take immediately after diagnosis, that has NOTHING to do with the perspective taking Mr. Duncan’s article addresses. But, yeah, if you cannot get your head in the right place, you cannot cope.

          You sound absolutely miserable. It totally sucks that your family has to suffer so much. But your misery isn’t a contained response to your personal situation- you’re deeply bitter, and fatalistic. I don’t think it’s fair at all to dismiss YOUR marriage problems as simply “a result of your son’s autism.” You married a guy who couldn’t hack it for better or worse, and you yourself don’t really seem prepared to face the world “for better or worse,” so it should be a little hard to judge him. You have basically implied you got “stuck” with custody of your son, and that’s why you’re obliged to take care of him, while your ex gets to… what? Bail, just like you want to?

          I’m sorry. Life is definitely not fair, but you do sorta get what you put into it. There are people out there who aren’t just fair weather friends, there are employees out there who appreciate a situation like yours, and there are men out there who aren’t total d-bags. Don’t choose to stay miserable.

    • Gavin Bollard July 25, 2012 at 8:45 pm #

      I think that Stuart’s article was mainly directed towards the higher functioning end of the spectrum. It’s the reason I often use the word Aspergers rather than autism. When you say autism, you really have to cater for both ends.

      It’s a great article for the higher end Stuart, well done.

      Jen, you’ve provided a good healthy dose of realism for the lower end of the spectrum. It sounds like you’re in quite a dark place now and my thoughts go out to you. You’re right though, respite care isn’t enough to help carers of those who need “substantial care” to pick up the pieces of their life.

      There are two great tragedies in autism, there’s the lack of care and services for those who have needs and there’s a lack of support for those who have responsibility. It irks me to think how much charitable money certain organisations pump into research when those in the here and now are so much more deserving of that support.

      The problem of course is that your child will grow older and will live longer than you. Eventually, you’ll have to trust someone else to provide care for him and if you can’t see that level of care being provided by society now, how can you expect it to be there for him when he really needs it?

      • Sunshine August 3, 2012 at 1:59 pm #

        His article was addressed to all parents of all newly diagnosed children. I think it’s unfair to represent this article as excluding those with more severe issues.

        No matter what, you need to take stock in what you have, take control over your own support system, and love your child unconditionally. These are the exact 3 things that Ms. Miserable over here is missing. Hmm. And she’s miserable… coincidence?

    • Kay August 22, 2012 at 7:20 pm #

      I’m so sorry-your situation is not one any of us would want. It’s miserable and I don’t know who could handle that year in and out. Perhaps you can petition for more child support that would allow for residential/boarding care or offer to let your ex share custody (which would result in the support for residential care)? It sounds like your son might benefit from that level of structure?

  5. May July 27, 2012 at 4:05 am #

    This was a very touching article. Thank you so much. Unconditional love is something autism asks, requires, challenges us with. I have a 6 year old son with autism. Yes, there are moments when I feel like I’m losing my sanity from the grating reality it brings but still, there is a part of me that refuses to give in to melancholy, telling myself that this “unfortunate” disability should not define me.

    But rather should stoke me to become better and stronger and possibly achieve more because I want others to see that my child is an inspiration to me.I want myself to be a reflection of what a blessing he is to my life even if society often doesn’t.I know there will be tough times ahead but problems will always arise whether our children have autism or not. Besides, we are the special forces of parents, I believe. Again, my thanks.

  6. Lisa Monaghan August 1, 2012 at 8:54 pm #

    I couldn’t possibly love this more if I tried it sums it all up beautifully and thank you for writing what I have so desperately been trying to convey at our support group meetings. It was May 2010 that I finally woke up and saw that there wasn’t Autism and then my son that they were they same person and I couldn’t hate Autism without actually hating a part of my son. I changed and it changed everything well that and Son Rise (same idea). We went from no progress to progress and my son who was considered low functioning sever profoundly autistic is using words, making eye contact and wanting to interact with me and others. He is 9, and it saddens me it took me so long to recover and make this change and I do truly believe it is because he feels our love and acceptance that he is joining in our world.

  7. Neel@Parentedge August 2, 2012 at 5:36 am #

    Superb article, very touching !!

  8. Sara Higgason August 2, 2012 at 11:10 am #

    Thanks so much for this article! we just found out that our eldest (5) son has been diagnosed as High functioning Autistic. my husband is active duty Army and we live on post and therefore have to go through steps a little different than others, and it can all be a little overwhelming. this is a fantastic reminder and a great place to start! thanks for sharing your wisdom!

  9. feralchick (@feralchick) August 3, 2012 at 1:12 am #

    Jen’s comments really underscore the inadequacy of the label “autism”: it’s applied to so many disparate conditions that giving general advice (or presenting general portrayals) can be counterproductive. While I applaud the effort to raise awareness, I wonder if we’re not also at the point where that awareness can be made a little more complex. . . .

    • Sunshine August 3, 2012 at 2:04 pm #

      Jen’s comments underscore how universal Mr. Duncan’s advice is. She has been selfish, she hasn’t taken stock of what she has, she hasn’t put anything into a support system, and she doesn’t love her child unconditionally. She’s totally miserable. Autism didn’t do that.

  10. Jessica February 28, 2013 at 5:34 pm #

    I know this is a very old discussion, but I just discovered it while looking for other information. While the article was very nice, the comments from and to Jen have left me stunned and in tears. How dare anyone judge or preach to her after reading her heartbreaking story! I can’t even imagine what she has been through and can only pray that things are better. Please people, if you can’t sympathize, just let her say what she needs to say. It’s her truth and the reality that many people are also experiencing. I read through everything she said several times and didn’t reach the same conclusions as some of these hard hearted folks. She needed to share and get support, not condemnation. Sorry if it is uncomfortable to some of you, it is not possible to be positive all the time. Jen’s story does not have to take anything away from the original article, but adds the perspective of someone farther along on a much more difficult path than most. Maybe Jen’s situation would be different if then were now. By the way, I wish I had been able to read Mr. Duncan’s article 10 years ago. It’s excellent advice and needs no defending.

  11. Susan June 9, 2013 at 9:56 am #

    Thank you, Mr. Duncan, for this article. I found it at just the right time. My son is nearly 14 years old and he is high functioning. We’ve had more than a few issues lately and after reading this, I feel totally selfish. I love my son for who he is and I always have but I feel I’m not doing enough to understand him. Your article makes me want to strive harder to live life and love every minute of it with him. Thanks again.

  12. jodielaa June 10, 2013 at 6:33 pm #

    Just had autism diagnosis today for our son, 9. I’m blessed for all my children, loved your article! So true, I’ve been through so many emotions & its hard when people especially family don’t understand, but only you can do the best for your child. We’ve just started to home educate our son & this is great for him, he’s happy & safe, the two most important things!! Maybe now with a diagnosis we might go view some special schools that understand & can look after our sons needs. Best of luck & much love to all parents out there & remember we are blessed 🙂

  13. H June 13, 2013 at 2:41 pm #

    I understand what it’s like to be in a rut and exhausted, I think only someone who has been there can understand and relate to what you’ve said. I know the frustrations color the words but I still see the warning for what it is. You are just trying to tell people brace yourselves as much as you can because it is a parenting and marriage test. I believe in plan for the worst but live for the best case senario. Don’t worry about what others say but I do hope you will get a break soon so you and your son can connect again when you’ve had a chance to recharge.
    To everyone else – please don’t judge just listen and try to understand what it’s like on your own and you’re completely exhausted.

  14. Christen September 20, 2013 at 4:00 pm #

    I was searching for articles for my husband. He is having a really hard time with our sons (also named Tyler) recent diagnosis of high functioning autism. He says our sons behavior embarrasses him in public and his answer is to never take him places and expect me to deal with ever single aspect alone. This was such a great article. I really hope it helps my husband to understand how important his actions and words are to our sons future. It was really good for me too, thank you very much. (Just before I posted this I caught the picture of your son. He is adorable and so lucky to have you)

  15. Dave chisnall April 5, 2014 at 3:38 pm #

    Priceless information.

  16. Amy C. May 12, 2015 at 2:58 pm #

    Thank you, thank you, thank you.

  17. Chris August 25, 2015 at 3:21 am #

    Thank you for that inspiring masterful, just best article. Wow!! Love it

  18. Sarah September 1, 2016 at 5:13 am #

    Mum to Christopher with autism. This is a super well thought out article, thank you in a sea of negativity from search engine results in autism, this article is like a breath of fresh air! Thank you. Thank God for our very special unique children.

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