Why my child needs to know that he has autism

I am an adult with Aspergers but I wasn’t always. Before I was diagnosed, at 36 years of age, I was an adult that was very confused, I had no self esteem and I was always extremely depressed. Before that, I was a child that was very confused, with no self esteem and depressed.

For the better part of my life, I struggled with my work, relationships, school, my appearance, friends… let’s just say that I struggled with everything. I hated life. But the part that I hated most was the feeling where, it’s not just that I didn’t fit in, I was the same as everyone else but I simply could not make anything in my life work right no matter how hard I tried and no kind words, medication, self help books or anything else could fix it. No one could tell me… what was wrong with me?!?!

Now, before I continue, if any of my family is reading this and it starts to make you feel like you let me down, don’t. You didn’t know, I didn’t know, no one knew. And considering how mixed up and down I was feeling that whole time and the fact that I’m still here, I’d say you did great!

My 3 greatest fears in life, listed least to most are:

  1. Death
  2. Being alone
  3. Feeling alone despite being with people and not knowing why

AloneWhen my son was first diagnosed with autism, I came to realize that many of his experiences mimicked my experiences. I wasn’t just reliving my youth the way a parent does through their children, I was reliving my heartaches. A lot of my past was suddenly explained to me as I started to put the pieces together. This was amplified a hundred fold when I was actually diagnosed. To this day I don’t know why but somehow, making it official, really opened my eyes to a lot in my life that had, up until then, remained unanswered.

I was bullied, I had few friends, I had bizarre obsessions and habits, I never wanted to leave my room and I remember every detail of every event that caused me pain, whether physical or mental. For example, I remember how I got the scar on my knee when I was 2 and I remember very well how I felt when my mom told me that I told an inappropriate joke before I was old enough to know it was an inappropriate joke. I felt terrible!

Still, I can take all that and more (which I am not about to list on a public blog) and very confidently say that it doesn’t even come close to the very overwhelmingly sinking and crushing feeling of being so completely and totally alone while with people that love you and want nothing more than for you to just feel good about yourself for once.

If this was a YouTube video, I’m sure most of their viewers would read that last bit and then comment to tell me that I’m just a moron and should just smarten up and listen to those people.  In a way, this is a good thing because it tells me that those people, and probably most people really, will never know just what that feels like and how impossible it is to do. That’s good, I think. I would hope that most people never really understand how that feels.

I’ve talked to a lot of people that are either waiting to or hoping to never tell their child that they have autism. They fear labels and they do not want to make them feel like they’re different or that there is something wrong with them. I get that, I really do, but take it from someone that’s been there and done that, they know. Believe me, unless your child is still two or three years old, they know.  But they can’t quantify it nor explain it and if it affects them even a bit like it did me, then they most definitely do think that there is something wrong with them.

Now, I want to stop right here and say that I know full well that all people are different, all lives are different and just because my upbringing was as I describe it, it is in no way a certainty that anyone else’s life would be the same. Still though, in my acceptance of this fact, I must also insist that you accept the fact that maybe, just maybe, it could turn out the same.

When you feel like you can’t ever have friends, you can never do anything right, everyone gets to be happy except you, talking to people comes easy to everyone but you, you’re a bully magnet, you can’t do or say anything right and life in general seems to not work for you, at all, ever, you KNOW you are different. You KNOW that something is wrong with you. But what you don’t know is why. And not knowing why is the scariest, most lonely feeling in the world.

I need to base my decision on my previous experience. I need to know that my greatest fears and feelings are something that I do not pass on to my son. I know now that I can’t protect him by keeping the truth from him.

My child needs to know because not knowing is a pain that I could never wish on anyone.

What he does with that knowledge is up to him. Will he come to accept that there really is nothing wrong with him, as I have? Having autism and being different doesn’t mean there is something wrong with you.  Will he seek out guidance and therapies to help him with friendships, work, love and life? I do not know. But at least now he’ll know what kind of help he’s looking for. I didn’t have that.

My greatest wish for my son, and everyone really, is to accept and love yourself. But how can a person accept and love them self if they never really know who they are?

 

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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17 Responses to Why my child needs to know that he has autism

  1. Tee September 18, 2013 at 10:49 pm #

    Thank you so much for writing this! It helps me to know that telling my daughter she has autism is the right thing to do and not a burden. The burden is not knowing why! Thanks – may God’s be upon you!

    • Susan Bartle September 19, 2013 at 9:05 am #

      Thank you for writing this. I could have told my teenage daughter a lot sooner than I did. We have known since the 2nd grade, she learned when she was in the 6th grade. Don’t wait. It is challenging to combat the loneliness. I want to love, love, love on the kids. They are loved and accepted. It’s hard enough to be a kid without autism/aspergers.

  2. shelly September 18, 2013 at 11:06 pm #

    I want to thank you. After reading this I know now more than I ever I made the right decision to tell my 8 year old son he had autism and explained what it was. I also explained to him that everyone is different. Everyone has a diagnosis of some sort and he just needs extra help with socializing. The ocd and the odd and the melt downs are part of it. The obsessions with certain topics I have embraced. I just love that he loves to learn. He is an amazing little boy with the biggest heart ever. He is constantly reassured about his worth and just how wonderful and loved he is. But it breaks my heart because he still feels that no one likes him or loves him. Is this something that will change? Will he ever know and believe how wonderful and special he is and how I am so blessed to be his mom?

    • Stuart Duncan September 19, 2013 at 12:04 am #

      Well, to be honest, no one can possibly know. Some people will hate how autism affects their life. Some people will love it. Some people will love or hate themselves regardless of autism at all.
      There’s no real way to know how someone will feel about something or even themselves as they go through life.
      But I will tell you this… unless you’re on an epic mystery adventure, the unknown very rarely brings you good feelings. Not knowing leaves very little choice. How can you choose to accept or not accept, to love or not to love, when you don’t what it is that you’re supposed to accept and love?
      Love it or hate it, at least he will be tackling it head on from here on out. At least he knows what his choices are.

      For me, as I said, I did alright, all things considered. And that’s because my family saw me through it. They saw me as special and wonderful and even though I didn’t believe it myself most of the time, I never doubted that they believed it. That’s pretty powerful.
      Will he ever believe it? I honestly can’t say. But he will know that you believe it. Sometimes that’s all you ever need is for someone to believe in you.

      These days though and as he grows, the stigma of autism and the fears lessen. So personally, I would be optimistic. Especially with such a supportive and caring mother on his side.

    • Kirsten Latimer October 7, 2013 at 4:37 pm #

      I know the pain you feel. My 10 yr old Aspie son has no friends at school and he gets sad about it (also amazing, like your son). I remind myself that I also had no friends at school at his age but I have good friends now. Aged 48, self diagnosed aged 46 having stumbled through life unknowing. Just keep doing what you’re doing; loving him and letting him know his worth. You sound like the mum I wish I had. X

  3. Cassie Cox September 19, 2013 at 1:11 am #

    I also saw my life flash before my eyes when I learned my daughter has autism. I am 32 and still have no diagnosis, but when you know you KNOW. I told my daughter about her diagnosis at age 6 1/2. I tried to wait but she pinned me down one day with her sadness, DEMANDING to know what was wrong with her. My dear friend had sent us a book, ALL CATS HAVE ASPERGER’S SYNDROME. We began to read the book, and she looked me in the eyes and said, “That’s just like me.” It helped she’s hooked on cats. I got put down a lot for telling her. I’ll never be sorry. None of the therapy or work we’ve done would have made any difference to her life if she thought there was something unacceptable about her that needed to change. We approached it all together -US, not YOU. Helping to make it easier, not changing who she is. Encouraging her obsessions as a way to de-stress at home, so she’d feel brave enough and safe enough to venture out at school and try again. I didn’t have understanding growing up. I decided that if my misery meant I knew how to give her better, it was worth it. Thanks for letting other parents know how it feels, so they know how to give their kids better too. God bless

  4. shelly September 19, 2013 at 1:23 am #

    Honestly, I dont know if how he truly feels about the autism. I know that he loves the idea that im a true supporter and do everything I can to show him im a supporter and I will always be there by his side. He does get bullied from time to time. And im so happy that he trusts me enough to come to me when it happens. I try my best to show him hes not alone in this. I know I will never ever understand how hes feeling or what hes thinking all the time. His little brain goes 24/7. As much as he loves and needs routines ive made it a point for him to know that nothing ever stays the same. After many melt downs and me preparing and explaining to him in advance any up coming changes he is doing a lot better with it. We dont have resources in our area for that added sulport system or someone to tell me how to handle the back talking, as you know, he believes he is an equal to an adult. He talks to you they way you speak to him. When he says something inappropriate, I tell him so and then explain why it was inappropriate. His father and I divorced 2 years ago. His father fought me every step of the way for pushing for a diagnosis. He thought I was trying to label him. When in reality I wanted to know just so I knew how to help my son through this the best I could. I still dont have anyone to tell me how to handle certain situations which is frustrating. But he gets straight A’s in school and he has friends tbat do spend the night. I couldnt be more proud of any child. I also have a 4 year old boy who has learned some of his brothers behaviors. I just want nothing but the best for both of them. I want and hope he embraces it because it makes him who he is. Him and his father never truly bonded. It wasnt until about a year ago that his father accepted the diagnosis. Im not judging his father, just stating the facts. I know it was hard for him but so much harder for our son. I do t get mad at the melt downs that are violent most of the time. It. Reaks my heart to see him go through it. I do my best to avoid the triggers but sometimes its just not possible. Luckily we talk about everything. I answer all of his questions honestly (age appropriate) but I never blow him off. Its a challenge for me….yes….but I cant even begin to imagine what he goes through sometimes. I hope im doing all I can to provide the right tools for him.

  5. Jennifer September 19, 2013 at 9:47 am #

    My son Jorge has autism and is only 7. It was only six months ago or so that I told him that he had autism. I figured it was better for him to know the truth sooner rather than later. I can remember being learning different my whole life, but not finding out until I was 16. Also it’s only recently that I found out my learning differences are also called Asperger’s. I sure wish I knew sooner.

    • PK-walkinontheedge September 19, 2013 at 9:59 am #

      Thank you for this. I am coming to the place of disclosure soon with my son, and also with his classmates. Jess’s blog at A Diary of a Mom gave me confidence in the idea of disclosure and my son’s school support people (Speech/RE?teacher) are on board to support him, for which I’m eternally greatful.

      My son is almost 6.5 and is mainstreamed in 1st grade. He’s verbal, social, smart, and I just love him to pieces. We haven’t had an official conversation yet, but it will be this year. He “stands out” a bit in his class. He’s really into scientific things, and definitely falls on the quirky side. The potential to be a “bully magnet” is definitely there. He’s a sensitive kid. He judges himself harshly when he makes mistakes, and has trouble with emotional regulation when he gets upset. I’m so lucky to have a supportive team at his school. They’ve found some books about talking to kids about autism, and when the time feels right, the teacher will read it. I have some things for him as well. I already talk to him about how people are different, in body/mind/language/color, so the conversation will just be an expansion on it.

  6. Julie Sparks September 19, 2013 at 10:19 am #

    I have always treated autism in my boyz a lot like adoption. We have just used the term autism and autistic from the get go. It isn’t anything “wrong” just different. Some things are perks, some tremendous burdens, but it is just part of who they are. Would I eliminate it? Probably for the younger one (he’s almost non-verbal and 15 yo) but for the older one it would be his choice.

  7. Teddy Caddy September 19, 2013 at 10:32 am #

    We got a book for my son called Squirmy Wormy ( http://www.amazon.com/Squirmy-Wormy-Learned-Help-Myself/dp/1935567187 ) which helps to explain Autism to a 3 year old.

    He doesn’t really know the word “Autism”, but he identifies himself as a “Squirmy Wormy”.

    • Kirsten Latimer October 7, 2013 at 4:30 pm #

      There is a book called Tacky the Penguin I recommend. It is not about Aspergers, just a todder’s book about being different. My kids still love this book aged 10 and 7. I have not come across Squirmy-wirmy but it sounds great.

  8. june October 6, 2013 at 1:01 pm #

    I’ve always been open to my child about his Autism because it’s only fair…..it’s better coming from me or his father than anyone else…

  9. Dove October 6, 2013 at 8:24 pm #

    I was always “Retardo Margo” at home (to my siblings NOT my parents) and in the hood. I was also constantly being punished at school for not living up to my 180. Confused? You betcha! Never been diagnosed. At 54 I don’t care. It might have helped me with my daughters, though.

  10. Kirsten Latimer October 7, 2013 at 4:26 pm #

    I diagnosed myself at 46. My kids I now realise have Aspergers too. I have told my son aged 10 and I will tell my daughter too. It can only empower children to let them know their true natures. I focus on encouraging their skills because society/schools seem to focus on their issues. I spend many hours explaining the world and how it works to them. My son, of his own volition, recently told a teacher he has Aspergers (she had accused him of being disrespectful) and she listened. I spent my childhood disappointing people and not understanding why. It was painful. That is a heavy burden for a child and I don’t want my children to carry it.

  11. jean November 22, 2013 at 9:44 pm #

    thank you soo much my son was just diagnosed at the age of 18 and all his life we thought it was just a learning disability and a.d.h.d along with being diagnosed as m.m.r and o.d.d hes just been recently diagnosed with p.t.s.d and they say he has manic depressive bipolar disorder ….he had a speech delayment that he was diagnosed with at 3 and now that leads me to think he was mildly autistic all along i feel bad cause i had no idea and now i am still in shock not sure how to explain it to him or myself and i don’t think his mind would truly absorb it after all they say he tested to be on a 10 yr olds level so idk ….he often gets shoved to the side by my family and neices due to his condition they always always pick on him and if i defend him i am just spoiling him is basically what i am being told but i still defend him no matter what anyone says hes my heart ….how do i tell him he has autism and explain it to him “sigh” ….thanks again though for sharing your story that helps comfort me …..

  12. fgib57 January 2, 2014 at 10:52 pm #

    A very interesting blog – thank you for sharing x

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