I find it very difficult to share the deeply personal situations that go on in our lives. I have shared this before and though I am trying to learn to do this because I know there is usually someone out there who can benefit, but I have to be honest, it’s still a pretty big challenge for me. But, here I am, holding my head high and reaching out for suggestions and thoughts from you… my readers… because I am in an area that I have tried to deal with and I am not really having any success.
My son is 9 years old. He was diagnosed on the autism spectrum at the age of 4. He is, as I have written about previously, normally a fun loving, intelligent, creative little guy that loves animals, Lego, video games, books, sports and so many other things. He has shown me a different way to look at the world and has taught me many important life lessons… including tolerance. He has an amazing little group of friends that are so treasured, by him and me. I truly wouldn’t change him for anything.
Now, we have had our struggles, but what parent and child hasn’t? However, we usually work through them and come out the other side with flying colours… this time it’s not going so well.
You see, at 9 years old, he has become extremely sensitive to the fact that he has autism. Previously we have embraced autism and celebrated those things that make him ‘different’ as these are the things that make him unique and who he is. He’s been proud of who he is and what he has done… as he should be. Mom has been, and is always proud of what he does and who he is becoming.
As I wipe a tear from my eyes, I think about this little boy of mine who is now struggling with who he is. He HATES the fact that he has autism. He HATES the fact that he is ‘the complete opposite of everyone else in the world’, as he puts it. My heart breaks when I hear him say, ‘Mommy, I don’t want to have autism anymore!’ which is usually followed by tears and him saying that he doesn’t ‘fit in’ anywhere. We have talked about his strong points and we have talked about the wonderful characteristics that he has that makes him different. He uses the term ‘NORMAL’… which makes me cringe… and I have tried to explain that no one is ‘normal’ and if we were all the same than this world would be a very boring place. In our house… NORMAL is a setting on the dryer.
My son is only 9 years old! Society has created this ‘model’ that people are supposed to fit into and hearing a child at 9 years old say that he doesn’t ‘fit in’ is hard to hear. Why can’t people understand that trying to ‘change’ our children and loved ones only makes it harder for them. Maybe society does understand that… and they just don’t care!?! I don’t know anymore! What I do know is that I have a little boy that no longer wants to be who he is… and as a parent it is the hardest thing that I have had to deal with thus far. My heart is deeply saddened… and right now, I don’t know what I can do to help him aside from loving him and being there if he wants to talk… but I am certainly open to suggestions.
Thank you for sharing this. As I read this, tears are streaming down my face because it reminds me what is to come. My son is 7 and he has autism. He has not asked these questions yet but I know the day will come when he will. I don’t have the answers for you but I so wish I did. When they are sick we always tell them they will feel better soon, that the sickness will be gone soon. You can’t tell them that with autism. My son struggles to make and keep friends and doesn’t understand why his sister has so many friends but he doesn’t. He too was diagnosed at 4 years and while things are not always bad, my heart continuously breaks for him and other kids that struggle as he does.
Thank you Alicia, for your comment. You are right… it’s not something that is going to go away – the struggles will continue and they need to learn to be strong and overcome them. I just wish society didn’t make it so hard to do that! Our children and adults that live on the spectrum need to be accepted for who they are and I stand by the fact that the world would be a better place if they were.
As I said, we usually come through the other side with flying colours… this one isn’t so easy 🙁 I want to thank you again for sharing this with me. It means a lot – I know I am not the only one going through this… just really wish that none of kids ever needed to go through this.
All the best to you,
Jen
Hey Jen – Diana is more of a sister than a friend to me. We have known each other since we were about five years old. You are obviously aware that her sons are on the spectrum – so is my son.
Diana sent me the blog you had written because she says your son is dealing with a lot of the same issues Marshall does. Mouse is in school, just started grade seven this year. He is integrated into the regular public school system with an EA and on an IEP. When he started in sr. kindergarten he was completely non-verbal, and through IBI therapy and YEARS of hard work (as i am sure you can relate!) he is now functioning very well with his peers.
however…. yeah, there is that nasty, horrible word – NORMAL. i freakin’ hate it. my GP said the problem with schools and society in general is that they want “mcDonalds kids – cookie cutter kids”. they all think the same way, they all learn the same way, they all play the same way, they all do the same things. well, reality sux. NO two kids do everything the same way, that is whether they have autism or not.
i have come across this in the school, i volunteer there three days a week – partly because i love working in service with the kids, partly so i can keep an eye on what is going on. The kids there know me and know that the school has a zero tolerance for bullying and i have a LESS THAN zero tolerance for bullying. i got in one girl’s face last year over it and i am sure she will be thinking twice before she EVER pulls that crap on ANY child again. anyway, i digress.
one thing i have done while working in the library is LISTEN to the kids. some of them have told me kids pick on marshall because he “plays” different, he still plays with pokemon and he fixates on things. like cars. or bey blades. or video games. or whatever he is into in that moment. so i sat there and listened to them when they were telling me this. and then they listened while i spoke. and i said it loud enough that they could hear it, but also that other kids – including marshall – could hear what i was saying.
one thing i said to them was that NO two kids are the same. you like knitting – you like painting and drawing – you like lego – you like racing cars – you like playing card games – we EACH have something we are good at – that we are SPECIAL with. i explained to them how marshall may have some difficulty learning some things – but in other areas he is amazing. He knows how to strip down a carburator, clean it and put it back together again. Do any of you kids know how to do that?? and their eyes got big, because they didn’t know how. i also told them how he is a whiz at lego – that he can build the big huge battleship in 2 hours. they freaked on that. i also told them how when he was a baby he loved to do puzzles – and some of the kids could relate to that because they like puzzles too. i told them he would do a puzzle, then take it apart and do it again – UPSIDE DOWN. and THAT is just because that is how his brain works. He likes to see things as a puzzle, or a game.
Many kids have difficulty with math. many kids have difficulty with reading. Some kids find their strengths in these areas. EACH CHILD IS DIFFERENT. THERE IS NO NORMAL. We need to get this through their heads at a young age – and really need to work on the schools to get it through THEIR heads as well. Everyone has their strengths in life, and we need to build on those strengths. Someone who is creating castles or cars with lego today could become an architect or an engineer in the future. Someone drawing pictures now could become a graphic artist or a designer. Someone who loves to nurture could become a landscaper working in garden design, or a personal support worker. Someone who is comfortable working with people could become a cashier or a clerk at the store, performing a service to MANY people who need it. Someone good with organizing skills or sorting could get work stocking shelves at a grocery store or any other store for that matter. EVERYONE has skills. Everyone has difficulties. It is up to us to be able to open our eyes and let our light shine.
We have experienced some bullying last year, and he is the most non-violent person i have ever met. however, we enrolled him early this summer in a program at our local martial arts studio – Zen Dragon (they have a facebook page) here in smiths falls. THEY ARE AWESOME. they know he is on the spectrum, and it doesn’t matter. IT DOESN’T MATTER!!!!!!!!!!!!!!! the kids are all there because they are working on their own PERSONAL goals – it is not even CLOSE to being like the school environment where everything is based on competition. THIS is based on cooperation. They are working together to achieve their coloured belts. That’s it. if someone needs help with punches, they help. if someone needs help with kicks, they show them. each child is working on their own personal goals, but it is not a competitive environment – it is a cooperative. yes, there is wrestling where they are trying to get the band away from another child. but it is one-on-one, and if someone just can’t handle it the coach blows the whistle and they go on to another pair of kids. but it is all GOOD. Marshall’s self confidence has grown, his gross motor coordination is improving, and he is learning to better his socialization skills. I have seen a big improvement since may, and he missed a month while he was with his dad in ottawa. he is not a ninja, and probably never will be, simply because he doesn’t have the attitude!! however, if he should find himself being bullied in the future, perhaps some of his training will come to mind and he will be able to defend himself. that is my hope.
so… here we are. with our NORMAL kids in an ABNORMAL society. hang in there, sister, it will all work out. he is going through a period of peer pressure more than likely, and he is starting to see himself as an individual. build on his strengths. let him know he is OK – there is NOTHING wrong with him. every child is wired differently.
hugs to you – feel free to write back if you would like – i would love to hear from you!! xoxox
Debbie… you made me cry! 🙂 Thank you!… well, not for making me cry but for such an amazing message. I appreciate it. Yes, I have seen your name on Diana’s page and will thank her for sharing my blog post with you.
Marshall sounds like an amazing young man!! And good for you for taking the initiative and being in the school like that. You are in the right place to help make a difference for him… and others on the spectrum too. When C was in school (now homeschooled due to difficulties based around safety issues) I was there a lot as well. It made a real difference for the kids in his class and their level of understanding and acceptance. Accentuating their strengths is so important and I have tried that with him now, but he just sees it all as a negative thing and that he is ‘different’ 🙁 But we will keep plugging away at it.
Yes, no two kids or adults are the same – spectrum or no – wish society could accept that! Love your analogy about the McDonald’s kids… think you hit that right on the nose!!!!
Martial arts – excellent. Not sure if you were aware but my husband and I ran a program here for kids on the spectrum. Hubby has an extensive background in martials arts, that’s actually how we met. So when we were unable to find C a program, we decided to start one ourselves. It was great fun and it’s so good for their self esteem. Working on individual goals rather than having to compete… wish more parents could see it as a plus. It was unfortunate when I would hear parents and workers say that ‘why would I put him in karate to teach him how to hit when he already has a problem with hitting?’ Trying to explain the self discipline… it didn’t work sadly. But that’s OK. There are some amazing martial arts programs out there where it doesn’t matter and I am so glad that you have found one! All children can benefit from MA!!
Thank you for your kind words and thoughts. I am sure that I will go back and read your comment many times over the next while as we do try to work through this. I am so proud of him and who he is… a loving, caring, smart young man and he is going to make a difference in this world – really has already! And he, who is a lover of Lego and video games already has his career path chosen… a video game designer – with the goal to design Lego video games! LOL Been his goal for the past few years, and I know that this will come true for him.
One last thing… isn’t it funny how one word… NORMAL… can be so ugly! I like it… our NORMAL kids in an ABNORMAL society! Amen! Thanks Debbie… will send this via email as well. Big hug to you! xx
Debbie – you’re making the change I want to see – standing ovation for you, mama. Standing ovation for you.
Aw, Jen. This breaks my heart. But you have to have confidence that you are a GREAT Mom. Any child will go through a phase of not liking something about him or herself – whether it’s a mundane feature like hair color or something more serious like this. Just continue to love him for who he is and over time he will learn to love himself again. And then hate himself again. And then love himself again…
Thanks my friend! It is true… they do go through phases… this one’s just really hard to watch 🙁 I expect you are right – he’ll pull through and get over it… until the next one! ugh! 🙂 Thank you! BTW – loved your post about spiders in your mailbox – now that made me laugh when I really needed it! Big hug!
I was diagnosed with autism when I was 19. I’m a very high functioning female autistic person. Just enough autism to hinder friendships, relationships, and getting and keeping a job. I HATE being autistic. I HATE being different. I also HATE living a lie when I pretend to be ‘normal’-which is what I did all through school. Now I’m trying to act like myself-finding out who I am-while trying to balancing life all at the same time. I just wish there was some way to not be autistic. My younger brother has it easy (I am 25, he just turned 20)…he’s autistic…and knows that he is different…but he doesn’t care. I do care. I want to fit in-I haven’t fit in anywhere-not even in my own family.
Sorry that you are struggling so much with your diagnosis. I understand what you are saying from the stand point of a parent watching my child struggle with the same issues. I hope that you are able to find a place where you are happy with your life. You are who you are and really, autism doesn’t make who you are. Be yourself and those that are worth the effort will see that… and appreciate who you really are. Thank you for sharing…
Looks like you are getting lots of advice from those who have been there and doing that. I’m sorry you are struggling. It is so hard to watch your child struggle. Hugs, my friend, as this too shall pass – eventually!
Thank you my friend… it is indeed difficult. Think it might be an age thing with him but with some upcoming changes I do hope that things will settle down. xx
Stick with it, Jen. Roll with the punches and smile. He is growing. You never know when an emotional growth and hormone growth take place at the same time. Worlds colliding never has the result you were expecting. Hugs! xx
Thanks Tracy! He seems to be coming through the ‘other side’ a little bit though has some pretty big emotional things he’s dealing with. He’s a trooper!! Appreciate the thoughtful words… as always! Hope all is well! Big hug! xx
Hi Jen, have just found your comment and even though none of my children has autism (although my little girl has some sensory issues- and so do I), I think it is not only a post about autism, it is also a post about differences. This I can relate to: at school, I was also ridiculed, because I was different (shy, sloppy, a slow learner). I’m raising my children to speak three languages, and I know that at some point, they may want to be like enybody else.Many bilingual children go through a phase where they refuse to speak their parents’ language because they they want to fit in, to be accepted, to be like everybody else. But, if my experiences are of any consolation, they will learn to accept and love their differences, and be proud of them. I hope this will be the case for your son. I hope he’ll understand that he has unique characteristics that makes him the way he is. I hope that he’ll stop caring about what other think of him. I hope he’ll stop caring about being normal and start caring about being himself i a world that wouldn’t let him.
Olga… I had to wipe a tear from my eye reading this! Thank you! Absolutely it is also a post about differences. I too hope that one day he will stop caring and just be himself cause I think he’s a pretty special little guy! Wishing you all the best… appreciate you taking the time to share this.
Jen
Jen – go here: https://www.facebook.com/thinkingpersonsguidetoautism?fref=ts – your blog post was shared there and some folks have been leaving some great comments in response.
As far as my advice and comments for you – (1) be sure to remind your son of each victory, of each wonderful thing he does and he is as often as you can. (2) find a group, a place, an organization where he can be with other kids on the spectrum. For my son it was taekwondo and the special abilities division. He was able to see there were other kids his age with autism who were just like him! he wasnt alone, he wasnt the only one, it made a huge difference. and as the years went by, the older kids encouraged the younger ones, set an example, and let them know it was going to be okay. When he was in high school his speech therapy teacher started a social group for the students she serviced – once a month they got together and did activities where they could practice social skills (movies, bowling, eating out) – reinforcing again, they were not alone, there were others just like them! Rent the dvd Temple Grandin. Another example of someone who dealt with being very different and has changed the world. a list of famous folks with ASD – http://autismhasmychild.com/celebrities-and-autism/
an interview that really inspired me was Michael J. Fox’s interview on “Inside the Actor’s Studio” – after his diagnosis of parkinson’s disease. He said “each one of us has our own bag of hammers” and if there was a circle of folks, each with their own burden to carry, would they exchange theirs for yours? not likely. Each of us have unique challenges, along with unique qualities. With courage and encouragement, we can all soar.
oh, thank you… I was not aware of that! i will head over there!
yes, my son is very active in the community and his friends are pretty much all on the spectrum. sadly he looks at the differences between them and himself tho too… and thinks that it is his autism that makes him different from everyone! ugh… and yet we try to explain that everyone is different… special needs or not… that’s what makes the world go ’round 😉
that’s awesome about the taekwondo!! we are a martial arts family so truly appreciate the benefits there! and what a great speech therapist to start such a group. we have done social skills programs and although he learned a lot the program then started segregating the children on the spectrum from the neurotypical children… kinda defeats the purpose and learning in my opinion! love to hear parents sharing stories of successes like this… thank you so much!
i will for sure check out Michael J Fox’s interview… thank you for that info. Beautiful words and thoughts to start my day… so appreciated… thank you! all my best to you! 🙂
you are most welcome:)
Aww sweetie, so sorry it’s a hard spot of time. I tell my kids that everyone in this world has to climb hard mountains and mature; and that they just have to do their hard stuff earlier, but it will make them strong. It doesn’t ease all the pain, but it gives the hope to keep going. Then we have hug therapy and tell each other that we are in this together. 🙂 Same goes for you. You’re not alone. You can even peek at my blog to prove it to yourself. (butterflykissesandpixiedust.wordpress.com)
Bless you my friend! So appreciate the kind … and wise words! It does make a difference knowing that we are not alone in this… there is comfort in that. Thank you for sharing your blog, I will for sure head on over! Have an amazing day!! x
Hello Jen:
I am a Speech Language Pathologist working in Western Massachusetts with a particular interest in children on the spectrum. I have a wonderful nephew who has high functioning Autism. Your boy sounds as if he has strong cognitive (thinking) skills. That will go far in helping him live in a world with “neurotypicals” otherwise known as “normal” people. Of course, you and I know that no one is truly normal. It’s so helpful to hear from parents and how they are coping with the challenges that come up at home. Your guy sounds wonderful and you do so much to help him remember all of his strengths and positive attributes. While what you are describing sounds very painful, it may also be a sign that your son is developing some social awareness. This is a little bittersweet but, a great opportunity to teach him some of the skills that he may need to navigate the social world. Michelle Garcia Winner who is an expert in dealing with children struggling with social and pragmatic issues, talks about helping children to learn about their strengths and weaknesses. Reminding your child that while some children need extra help in learning math skills (as an example), others need extra help in learning social skills. These skills need to be broken down and practiced but, can be improved upon. In a nutshell, teaching Autistic children is about teaching flexibility and perspective taking skills. It may be helpful at some point to attend a Michelle Gracia Winner conference or at least to get some of her books. “Thinking About You Thinking About Me” is a good one. I hope I was somewhat helpful. What a great support group of parents you have here!
Hi Amy… thank you for your kind and helpful comment. And yes, he does have very strong cognitive skills!!! What you have suggested has given me something to think about… thank you! bittersweet indeed. I think I will head to the bookstore this afternoon and pick up a copy of Thinking About You Thinking About Me. So appreciate the information! 🙂
My daughter is 13 and very high functioning. She has been fully included in a small perochial school in the US since age 4. She had 3 word utterances until 1st grade. She still has some eye contact and articulation struggles, but otherwise most people have no idea. We have struggled with whether to tell her she was diagnosed ASD when she was younger.
She really started to struggle around your son’s age with wanting to be “perfect.” We started having her see a social worker that she could develop a long term relationship with through her life. It has been a wonderful decision. I think at some point it’s great to have someone else other than your parents support you and someone that you can trust. I recommend interviewing LCSW’s (licensed clinical social workers) that have a lot of experience working with adolescents, high schoolers and adults with ASD. You need someone that can see you down a long road and understands the big picture. Maybe your son should have a male social worker instead of female so they can talk about guy stuff that will arise as his hormones kick in.
The perin my daughter sees has been great for our whole family and really supported us through many transitions. My daughter is now in a different small private school in 7th grade. She is happy and doing great overall. She still struggles at times, but the stress if me having to deal with it alone is off and she talks to the social worker about a lot of things. I hope this helps. You are brave to open up. It’s hard for me to ask for help too!
Thanks for sharing your story! Everything helps at this point…
You know, you’re right… my son really is I think, at a point where he needs to have someone other than ‘me’ to share things with. He doesn’t talk about this kind of stuff with his friends, but perhaps someone who is trained… I will check into this. Again, thank you! And oh no… not hormones LOL!!! Hard to think of him growing up, but the reality is, I can’t stop it 🙂
All the best!!
We went through something similar at 9. Now that my son is 11, he’s more comfortable with who he is and his strengths and needs. Nine was a tough time for us too. Maybe he needs an older role model to let him know that it gets better?
Hi Alicia! That’s good to hear!! Really must be an age thing 🙂
Both our sons are autistic, there have been both trials and triumphs in raising them I have taken a different direction in my career to accommodate their needs, and moved from Africa to the UK to get them the support they needed in growing up in an uncompromising society. They are both now adults and living in assisted living accommodation, we look forward to their visits on weekends and holidays, all the trials have been worthwhile and it is wonderful to see them living happy and fulfilled lives. Although it is hard take each triumph as it comes and enjoy your child foe who he is!
Bless you Andrew! Thank you for sharing this. It’s a big step to change your lives to accommodate like that… unfortunate that society almost makes you have to do that sometimes… ourselves are looking at the same type of thing shortly and I do keep that in the back of my mind… hoping that it is going to make a difference for him – one at least some level. I am thrilled to hear that your boys are doing well!! It is heartwarming to hear from parents that have been through the struggles and come out the other side with flying colours. Wishing you all the best… enjoy those boys of yours! And again… thanks so much for sharing this. 🙂
Jen thank you for your candid blog. It takes guts for a parent to put their struggles out there for others to see. I am not a parent of a child with autism but as a speech therapist I work with lots of children on the spectrum. To be honest working with those on the spectrum is the best part of my job! Some of the most amazing, interesting children I know have been diagnosed with autism. I would definitely recommend trying to find a social group where he can be around others on the spectrum and see that he is not alone. Introduce him to a Temple Gradin as well if you haven’t all ready. TED talks had her own and it was awesome to see her speak in front of that huge group. I also recommend you check out Michelle Garcia Winner and her website Thinking People.com. She is a speech therapist who has done a great deal of work with people on the spectrum. Her site offers tons of materials for parents, professionals, and kids. I would expect there are probably some books/materials you might find helpful. All that said give it time and know that you are doing the right things. Watching our children struggle with things we really can’t fix really stinks but it’s a fact of life. One day your son will realize that Autism is just a word and says nothing about who he is as a person. That would be like saying someone is blonde and expecting us to know if they were funny or smart or mean or kind. A label is really meaningless. Everyone has strengths and weaknesses in this life. It’s what we do with our strengths that matters. Good luck! Thanks again for sharing your struggles I admire you for it!
Hi Kieran! Thanks for saying that… it’s hard for me to share this way, but I’m getting a little better at it. Figure it is out there to help me… and maybe someone else too.
Love hearing that about your job. Those on the spectrum I believe are here for a bigger purpose – each on their own journey – and it’s really great when I hear people talk about how amazing children on the spectrum are… cause they are! My son has taught me so much about life. He’s made me a better person. And the things he comes out with when he’s ‘sharing’ things about his interests – love it! The creativity, the honesty, everything… he just needs to see it again.
We had him in a social group at one point and it was great until they started segregating the kids with autism from the neurotypical kids. It really kind of seemed like it defeated the purpose of the whole idea… I will look to see if I can find something else similar and suitable for him. He’s thankfully very involved in many activites – soccer, karate, horseback riding, swimming, etc and loves it all. Has a great little group of friends who mean the world to him.
I’m rambling! LOL… Michelle Garcia Winner sounds like the person I need to check out. You aren’t the first one to recommend her – so thank you for that. I will check out her website as well as any reading materials.
When he was diagnosed it took me a while to grasp that autism is only a label… one to ensure that he gets (or hopefully gets) the resources that he needs. Autism certainly doesn’t define who he is. Love the analogy about being blonde!!! So true!
Again, appreciate your suggestions and kind words. I have been truly in awe of the support that parents/individuals are offering in regards to this post. I think the biggest thing for me is to realize that I’m not alone in this, and it will get better!
Wishing you all the best!
Jen
You should find a local support group for autism where kids are welcome. This way, he can be around other kids like him and probably make some friends who are autistic. Then he won’t feel like he is so different from everyone else. Everyone likes to know people who are like them, this is how we all choose our friends isn’t it? Even if it’s subconscious. My son was in a social skills group in occupational therapy where he got to meet and make friends with kids who were a lot like him. He likes watching Big Bang Theory because Sheldon is (obviously autistic) so much like him, and he is the coolest character on the show. Make sure your son knows that there are a lot of kids out there who are just like him, and he just has to find them.
Hi Belinda… thanks for the comment! My son actually is very active in the autism community… he plays sports, does social skills and his friends are all on the spectrum… but it’s those little things that make all of us different from each other that he is struggling with… so in some sense it’s not necessarily the autism that makes him truly ‘different’… but it’s how he is perceiving it, if that makes sense. You are right though, we choose our friends because we are similar to each other. BTW – LOVE Sheldon Cooper!!! 🙂 Have a wonderful day!
Is he in public school? Finding him more spectrum friends might help. Reduce his stressors, especially bullies, but also find him things he can do where he can feel successful. Are there any hobbies he’d like to try? Is there a tutor, as opposed to a class, where he could hone his skills without the comparison or scrutiny of others? Then branch into classes after he’s got some skill and can feel good about what others will see, and he will be respected for that at least.
Hi Jeanne,
For safety reasons (primarily) we had to remove him from public school. So he is homeschooled but is incredibly active socially. He participates in numerous programs, many of which are autism oriented so he doesn’t have to manage those that don’t ‘get it’. He has a small group of wonderful friends – most on the spectrum. I like to think he feels of himself as successful in many things he does, but on the other hand he is a perfectionist at everything that he does… which does pose it’s own set of issues not related to autism at all! 🙂 Some great ideas/thoughts… thanks so much!
I have been called a curbie because my stance is that autism is a treatable condition. I have two sons on the spectrum and have not cured either of them. Still we have made a great deal of progress and have managed to diminish many of the most debilitating symptoms of autism using simply nutrition and detox. Take a look at our site and see if we can help.
Thank you for sharing Walter! I have heard of many positive results from such things. Will check out your site 🙂
We always tell our son that even though he has a hard time fitting in the outside world, he has a family that loves him and accepts him for who he is… and that he will always have a place here with us. We also point out that people without autism can also have difficulty fitting in society as well. He is 14 and he seems to be OK with that explanation. Best of luck to you! My heart goes out to you. I know the pain that you are experiencing.
Hi Marie! What a good point… that those without autism can have a difficult time fitting into society as well… true and I’ve don’t think I’ve ever thought of it in those terms to explain that to him. I will!!! Thank you! This too shall pass but I really appreciate your comment! 🙂 All the best to you!
The website for Michelle Garcia Winner is Social thinking.com. Don’t know where thinking people came from!!
LOL – Thanks Kieran!
Speaking as an adult who grew up as an undiagnosed autistic, it sounds to me like two things are going on: Firstly, he needs to meet other people like him (kids who share his interests, adult autistic role-models, other autistic kids). Right now, he’s convinced he’s the only person in the world like him, which is a very lonely place to be. I’ve been there. Show him hes not by showing him that there are other people who deal with the stuff he deals with and like the stuff he likes.
Giving him that sort of support structure will also help with the second issue that I think is happening. It sounds to me like he’s getting bullied, either by teachers, other kids, or both. The talk of him using the word “normal” in contexts that you don’t use it in is really familiar – other kids used to call me “not normal” in a derogatory sense all the time. You learn really quickly that “normal” is prized, and “abnormal” is wrong. If teachers or other adults respond to this by trying to teach you how to act more normal, it reinforces that it’s your fault for being abnormal and that abnormal is wrong. It should not be his fault he’s getting bullied, it should be the bullies’ fault for bullying.
Age 9 is, where I live, typically either grade 4 or grade 5, which are the grades where social bullying starts to get really nasty. As well, some teachers are just plain not nice people and will pick a kid to pick on all year. I was that kid when I was 8. When other kids realize they can pick on you with impunity because the teacher doesn’t like you… let’s just say you’re like a wounded gazelle on the plains. And the lions and hyenas are hungry. I’ve been there.
I’m not saying teacher bullying is definitely happening here (though peer bullying on its own almost certainly is – kids don’t come home crying about how they’re not normal for no reason), but it’s something you should keep in mind. And you should definitely take action with the school to see if you can resolve the bullying situation.
And for the love of all that’s good in the world, do not under any circumstances tell him to “just ignore” the bullies, or that he should “try harder” to fit in or that the “common denominator” to all his problems is him, and don’t let anyone else tell him that kind of crap, either. That kind of advice convinces you that it’s your fault. You can weather bullying if you have something to hold on to. But weathering the abuse while being convinced that it’s your fault and that you deserve the abuse? That’s what destroys you.
Reading above I see he’s homeschooled. Does he have siblings or are there allistic kids in the neighbourhood?
Siblings can be bullies, too, especially if they’re close in age. Especially especially if the sib is as socially competent as your kid is socially awkward, or if the sib is very concerned about how they look socially. One of my sibs bullied me. Weirdo sibling makes them look bad or embarrasses them in front of their friends. Weirdo sibling must be shunned for this is the way my sister’s reasoning at the time went. It hurts worse if it’s a sibling bullying you because they know all your sore spots.
And allistic kids in the neighbourhood can often be bullies, especially if they already have a clique set up.
Thanks so much for the comment. Yes, he is homeschooled… an only child.. and is very active in programs for kids that are his age (or a couple of years older). He has a small but close network of amazing friend who are almost all on the spectrum. Bullying was definitely and issue when he was in the public school system – the saddest one was him being bullied by another boy also on the spectrum! ugh! He was bullied by staff and this became one of the reasons that he was removed from school… safety was another. I don’t take bullying lightly in any context… he deserves the same respect as anyone else. I do appreciate what you have shared here. It’s always great to see things from other’s perspectives… esp those that have also had to experience it in their own lives. Thanks again… best wishes to you! 😉
My Aspie is 14, now. He was diagnosed at 7. He went through the same thing, hitting himself in the head because he didn’t want to have Autism, screaming and trying to hurt himself to beat it out of him. He had a horrid time in Fayetteville, NC schools because the teachers and the administration refused to help him or even understand him. He was the only kid in a huge school who was both gifted and special needs. The kids, for the most part, were just as ignorant and judgmental. It was truly hell for him, even the bus ride was hell. Eventually the opportunity came to leave, and we did not hesitate. We are in a much better place now; there are many more intelligent, understanding people, supportive schools, and amazing friends to help him when he needs help.
Lucas was at a high risk for depression and suicide in NC, here he is well-adjusted and now embraces his outer geek. He told a kid last year that he would be signing her paychecks when they are adults, so she “could just keep on talking out her butt”. He never would have stood up for himself before. These things did not just come from changing locales, we had done that before (I was in the Army) to no avail. It came from repeated confidence exercises, mom-counseling, a great deal of socialization, and some little bit of crying with him. He told me it was very important that I understand his situation, so I told him stories from my childhood. We talked about depression, suicide, and age-specific hard spots. I watched him like a hawk and constantly made sure he knew his family valued him beyond belief, and that got him through those crappy years.
I am blathering, and I am sorry, usually I am fairly eloquent when I write, but this is a passionate issue with me. Nine is a hard age for boys. Terrible for Autistic boys. They need a lot of understanding and confidence and love. I am just glad it all came together for my boy, and yours will be fine with such an awesome mom, too.
Hi Jenn! Thank you so much for your comment. First, I am very glad that you and Lucas are in a better place now where he can flourish. It’s amazing what a difference it can make having people take the time to learn, understand and have some compassion! Wish you hadn’t had to have gone through that in the first place.
It is making me feel better knowing that it really does seem to be an age thing from what I am reading here. Gives me more hope and comfort that he will again learn to celebrate and treasure those characteristics that I love so much about him.
No need to apologize. I am the same way… it shows you are a passionate parent that loves her son… and that is good! 🙂 🙂 😀
I really appreciate you sharing your story… everyone has been so great to share and it has really made a big difference for me! Thank you again! Best wishes! ;D
” Why can’t people understand that trying to ‘change’ our children and loved ones only makes it harder for them. Maybe society does understand that… and they just don’t care!?!”
Some people have children who face different autism challenges than your child. For some, including my son, he will never live an independent life. He has engaged in self injurious behavior when frustrated. He recently suffered a life threatening adverse reaction to his anti-seizure meds, seizures which often accompany autism on the lower functioning end of the autism spectrum. Many parents with children severely affected by autism would change our children, cure their autism disorders, for which they received medical diagnoses. I have advocated for early intervention services, autism trained teacher aides and teachers and adult autism care facilities in New Brunswick. I do not insist that you or others advocate in that fashion or seek to change your child but you have no right to tell other parents that they should not seek to cure their child’s severe autism disorders or to change them, by ABA intervention, to overcome to the best of their abilities their severe autism deficits. Good luck helping your child. I will help mine in the way I see fit including changing his severe autism deficits to the extent possible. Respectfully, Harold Doherty
Thanks for the comment Harold. First off…at no time did I EVER say that parents are not allowed to seek a cure for their child’s autism… that is not even remotely what this was about. I don’t have issues with ABA or any other therapies that are out there… early intervention is extremely important and I have written about that fact myself. The reality is that for everyone, whatever works to assist you, your child and your family is what works for you. The statement you quoted, if you read it in context with the post, was that society has a model that everyone is expected to fit into… and there should be no such model. It had nothing to do with ‘changing’ or ‘not changing’ an individual as far as their diagnosis. That is your business… not mine. All individuals should be accepted how they are and that is OK. If you want something different for your son… fabulous! I wish you all the best for you and your family! I advocate for my son and will continue to until he is able to do it for himself and at that point, I will probably continue to… why? Because he is my son and I want what is best for him. Unfortunately it sounds like you took this in a complete different context than anyone else who responded… the intent was that I was asking my readers for suggestions on how to overcome the fact that my son is in a phase where he doesn’t like who he is right now… and he blames his autism.
Very brave of you to share such a tender difficult experience. I’m an adult woman with Asperger’s diagnosed in adulthood and my mother was not emotionally available. So know that your love, support, and unconditional acceptance of and for your son is so important. I struggled a great deal of my life “not fitting in”. What helped me, though it always hurt some, was to pursue my own interests. I may have taken the celebration of my individuality too far but it has been helpful. I would suggest, if you haven’t already watching the movie about Temple Gradin’s life and talk to him about my what interests him or any creativity or strong interest he might have. Show him the bios and work of famous people on the autism spectrum. I see Asperger’s and other forms of autism as having more of a different ability than a disability. If you can find him a teen male teen and/or young adult that can mentor him – talk to him about the positives of “different” – he will benefit from mentoring, role models he can relate to. Even a movie like “Happy Feet” is a great one to talk about difference and how the main character works his way to self-acceptance. I’m a fellow Canuck – hope there are resources in your area. Just be there to support his struggles and help him to accept them. Temple Grandin would be a great example for him or even some famous people with Asperger’s – showing him many have struggled but the struggle is how we find self-acceptance and how and who one will be or what we have to offer the world.
Thank you so much for such a wonderful comment. I think we should all do what works for us and worry less about what society thinks.. kudos to you!! And thank you for sharing this me.
You know, it’s sad, I have Temple Grandin’s movie but I have yet to watch it. I must sit down and find the time as I know it is something that would likely make such an impact. I have read many of her books and attended a conference in which her mother spoke (that was interesting)… so I am putting watching the movie on my list!!! 😀
I like the idea of a male mentor like that… Thank you. I haven’t thought of that and this would be something I think my son would really enjoy. I will start looking into this.
Wishing you all the best and again, thank you for sharing you insights… very much appreciated 🙂
Jen
Heartbreaking words for sure. You have a lot of empathetic, kind advice on here. I particularly connect with the advice above to hang out with other spectrum kids, which it seems you are already doing. I think it can be comforting for kids to realize that everybody has factors in their lives that disqualify them from being normal. It can be hard for kids on the spectrum to imagine was those factors might be & it can be helpful for them if someone breaks it down for them. Off the top of my head, a mainstream classroom I visited recently had at least one child with a deployed parent, another who was allergic to all class treats, several with asthma, a couple with parents who did not speak much English, one who was not allowed to trick-or-treat, a handful with glasses, another small handful getting used to split custody… the list goes on forever.
My whole thing is to always pump kids full of confidence about how great their unique attributes make them. But sometimes they tire of that & just need to know that feeling weird is something that most people have in common. Ironically, feeling abnormal is totally normal & actually connects us to the rest of humanity.
Wonderful Emma – thank you! It is so true, when I think back to my son’s classrooms, how many unique needs there are… which is truly why I get frustrated when sometimes schools don’t understand that there need to be other ways to teach so all can learn. Your last statement… feeling abnormals is totally normal and actually connects us to the rest of humanity! Those words really do sum it up! My son has days where he can appreciate the fact that, in his words, ‘he is weird’ (makes me smile)… but others, it’s just too much. We plug away one day at a time 🙂 Happy Holidays… Can’t wait to go check out your Quiet Christmas Activities for Kids! Thanks again 🙂
I can somewhat relate to your son. I was misdiagnosed with autism around 5 years but during that time I suffered with complete insecurity and internal torture. My parents didn’t tell me about my diagnosis until I was around 10. The breaking news from my mother just shocked me. After she told me I would often cry myself to sleep in hopes I would wake up with a miracle. Because all that time I had thought I was totally normal but with some luck that made my life easier than all my friends. I hated having that label in my school records because I felt like it limited my full ability. I was
To attend regular classes with In Class Support and different other special ed accomodations. I couldn’t join any advanced classes even though I had the grades for it. Puberty made it even worse because I was noticing girls. I never had a girlfriend because a part of me was afraid that if I got too close to them then they would find out and feel sorry for me. I never told any of my closest friends nor any of my extended family and to this day they still don’t know about how I suffered a misdiagnosis. It was confirmed towards the end of middle school that I was misdiagnosed. However the special education dept delayed my dismissal until my junior year in high school. The reason I am saying this online and to the public now is because I want to stop being afraid to admit that part of myself no matter how bad it seemed at the time. I know now who my real friends are and I know my family loves me. I am currently building up the courage to tell my friends that I suffered a misdiagnosis.
My point being to this is that I want you to know that I know what your son is going through by putting it through his perspective (even though mine was just a misdiagnosis). One day through the right encouragement he will not be ashamed of himself. And when he is emotionally ready he can discuss this with his friends or really anyone. God bless you for being a good mother and caring about your son
Anthony,
Thank you for sharing such a personal story. Bless you for sharing actually! You should proud of yourself for not only doing that and feeling that you are at a point in your life where you are ready to share with others… but also for using your personal experiences to help others… like myself and my son. You should never be afraid to be who you are… diagnosis or misdiagnosis. Thank you for your kind words… and I certainly wish you all the best on your journey. Sounds to me like you are a pretty amazing person!
Cheers,
Jen
I feel this way sometimes. I’m glad to hear I am not alone…For the most part I feel like since I didn’t find out until this year (I’m nearly 22) that I most likely have autism, I had gotten used to being different before I had any idea there was a label for it, but sometimes I feel really frustrated by it, because when my opinion differs from that of my counselor she has used the autism to say that my perspective isn’t reality–and from that has now stopped working with me and banned me from my school’s counseling center…but most of the time I have learned to fit in when I can and that being like everyone else isn’t always necessary–I can make friends just being myself.
Thanks for sharing! Your final statement is what is so important I feel… fit in when you can and being like everyone else isn’t always necessary – you can make friends just being yourself. That is awesome! We all should live by such a statement! My son is doing better and will now, with a smile on his face say, Mom, I can be weird, but we are all weird, and that’s OK. The world would be a boring place if we weren’t different… if people didn’t have different views. I am sorry however to hear about your counselor… hope you have managed to find someone else to talk to. Wishing you all the best! 🙂
I am disturbed by your post, and its a tough and challenging situation – there are no direct answers, and I really don’t know what I would have done in your place. I had a down syndrome boy whose speech was delayed and had suffered with respiratory problems from birth… many times I felt helpless and did what was best. It is not easy to fight with the world and the systems. I have changed 3 to 5 schools for my son and still could never find one that would help him. My hugs to both of you as you deal with your struggles and I pray that this too shall pass…