Turns Out, It’s a Small World After All

When I made the decision just a few short weeks ago to start writing this blog, it was partly because I felt isolated.  We do not have an active support group for parents of autistic children in this county, or any active support group for special needs parents of any kind for that matter.  I knew that there were other parents of autistic and Asperger’s children in the school system, but – because of student privacy issues – also knew that I cannot contact these parents out of the blue to ask them to to join a support group.  So, with the exception of one other set of parents that I knew, whose ASD child is several years older than my own, I felt rather singular.

With the WordPress.com address in hand, I set out to make connections that I didn’t believe I could find here.  And, boy, did I find connections.  Suddenly, I am corresponding with people from Australia, Columbia, England, Vietnam, South Africa, and more.  I have met parents of grown children who have been where I am now.  Parents who amaze me with the ability to juggle two, three, four, or more ASD kids within just one household.  And parents who are right where I am now – just beginning, with way more questions than answers.

So, I find it somewhat ironic that, in my effort to explore the blogosphere and world for people like me, I ended up coming across one right here in my small town.  Earlier this week, while sitting in a waiting room, a woman whom I was chatting with noticed my new necklace pendant.  My father gave me a silver puzzle piece pendant for Christmas.  When I began to talk a little bit about my son, she told me she had suspected so because of the puzzle symbol.  And as soon as I began to share with her that I write a blog about it and have found this wonderful community of people like us out there, she began thanking God – talking about how alone she had been feeling all this time.  I gave her my blog address and asked her to please contact me on it and that, maybe, we could find a few other local people to start a support group.

She began to tell me about her child, her struggles to get anyone to take her seriously, and how, because of lack of understanding in her family, she has been keeping the diagnosis a secret.  Here she is, in the very same small town, feeling isolated because of a lack of understanding and a lack of parent support and community education about ASD.  This tells me that, despite the wonderful progress being made, we simply haven’t come anywhere near far enough.  For, if 1 out 0f 91 children had a particular disease, you could bet there would be a lot more governmental and public attention – as well as enormous community support for its victims.  But take a developmental disorder that makes some people feel uncomfortable – or inexplicably embarrassed – and you end up with all these little families like islands unto themselves.  My heart broke for her and for her obvious desperation and fear.

I’ve been catching a little local displeasure this week.  And, let me be the first to say that I am new at this.  Putting myself and my children out there for the world to see has been a new experience to say the least.  Perhaps I didn’t do it so well.  Perhaps I should have used an alias.  Regardless, I’ve made the bed, and it’s a little late to undo it.  I have been questioned as to whether or not it was the right thing to do to share my children’s lives.  I have upset people who feel that I have hinted connections to them to via this blog.  For that, I’m sorry.  When I began this blog, I thought that I might get 100-200 people who might follow it and be a source of shared experiences for me.  I certainly didn’t expect to go viral.  I didn’t plan for anyone local to recognize clues to any real people as I didn’t really think anyone local would be taking note of an obscure parent autism blog to begin with.  Obviously, I am going to have to work on making some actual experiences a little more hypothetical and not alienating real people, for that is certainly not my intention.  Lesson learned.

But I have learned something else that I wish I hadn’t.  People clearly do not want to talk about or be associated with autism.  For, if a child were stricken with a life-limiting disease, there would be dozens of Facebook fan pages popping up.  There would be fundraisers and a local biker group doing a benefit ride and charity concerts.  And – no one- and I mean NO ONE would be the least bit upset to be connected to it in any way possible, would they?

No, autism is not a disease.  It is not contagious.  It is not even a tragedy in its higher functioning forms.  But, in its severe forms, it darn sure can be life-limiting.  It can rob our children of communication.  Their parents might not ever, ever, hear the words “I love you” from their children.   It can rob our children of friendships, because some cannot connect to others.  It can rob them of an education, because they might not be able to learn the way they need to.  It can rob them of affection, because they might not be able to withstand the physical discomfort of their own mother’s touch.  It can rob them of dignity, because they might not be able to be toilet trained or be self-sufficient in adulthood.

If that isn’t life-limiting, I don’t know what is.

I’m angry right now for every mother and father I’ve heard from who are facing the challenge of autism alone.  I’m angry at their families, who persist in convincing them they have something to be ashamed about.  I’m angry at school districts around this country who are ignoring the fact that so very many children in its classrooms are affected by a condition that needs specific, research-based interventions to help them reach their potential.  There are districts around this country without a single expert in autism even advising them, let alone teaching and providing therapy to their students.  I’m not getting political and making a plea for more money.  I’m suggesting we take a good look at the money we are already spending.

And I’m angry for this one loving mother, feeling alone and powerless in a family and world that sends messages to her to keep silent and, thereby, ashamed.  I’m angry that she has to listen to child care providers who suggested, through their ignorance, that autism is synonymous with mental retardation.  I’m angry that the only person she feels she can connect to is a complete stranger in a waiting room.  People, I think we can do better than that.

So, I may not be doing this right.  I may be stupid in my belief that transparency is the way to de-stigmatize ASD. I may have made a mistake putting our lives out on display.  But I can’t help but believe that the more people who are out there telling the world about their children and shouting the need for autism awareness and support will one day mean there will be fewer families enduring this alone.  And fewer children trying to stumble their way alone through a world that, with just a little more awareness and a deliberate approach to educating autistic children, could help them to realize the futures and dreams that all people share for their children and for themselves.

When are we, our families, our communities, our school systems, and our country going to stand up and admit that the Emperor is not wearing any clothes?

72 thoughts on “Turns Out, It’s a Small World After All

  1. Julie

    I’m so thrilled for you that you have found this on-line community! I remember the start of our journey w/autism and it was so lonely. I knew no one with a child with autism. There was no Facebook, no Twitter, no support groups. Even 9 years later I was still lonely & then I started blogging and have been overwhelmed by this community as well.

    I have learned the lesson on writing about local happenings as well. I don’t name names, but anyone close to the situation would have known you I was talking about. I learned my lesson & I’m moving forward. Hindsight is always 20/20. Move forward and continue to share the wonderful insight you have!

    I personally believe that transparency is what has really allowed us to realize that we aren’t alone.

    Not sure if you saw, but I am doing a cool giveaway on my blog for some personalized photo flashcards. I think they’d be a great tool for your little one!

    Blessings to you!

  2. Lisa

    GREAT post! You have a way with words. It really is astounding, to me, how so many of my friends and family were like, “oh, he has Autism, he’s fine”. And pretty much have never asked again how he’s doing. Ever. Talk about isolating. Like you said, if I had told them that he had cancer, or a disease, well, then I am sure more support would have been there. Would be there.
    I get so frustrated that because his disorder is neurological, and his outward appearance is fairly typical (aside from his anxiety behaviors, flapping, and stimming), no one seems to want to fight for his cause. Absolutely frustrates me. To the point of tears. My kid mat
    ters. The other 1 in 90 kids matter. Why won’t people listen when we shout?!

  3. judithornot

    Autism tends to be regarded a mental illness by some people, so it’s hushed. Not enough is known about it yet, and there are hints it is at least partly genetic, so that worries people, too. Add to that the possibility it is linked to all the food additives they have been putting in our food since the 1940s (such as MSG), and Big Business REALLY doesn’t want that talked about. But there is no healing or help in silence. I admire your resolve!

  4. Kelli

    It’s a beautiful post, Leigh, and right on the money. My sons don’t mind being fodder for my blog, and my Aspie has even written a guest post, but my husband is very private so I don’t usually discuss his feelings. I’m still just a little friend and family blog though, perhaps it may be different one day.

    But we have to keep putting information out there. In many cases we are the only advocates our children have. I think you are doing a wonderful job. Keep at it!

    Kelli

  5. zohrbak

    AMEN! I am the QUEEN OF OVERSHARING…and that has been the case since LONG BEFORE my son’s diagnosis. However, it all got a little weird for me once that happened. I didn’t know if it was still okay to complain about his behaviors, our challenges, and at times even to find the humor in certain sitations, given the diagnosis. I have now settled into a still very transparent process that I try to use for good, and not evil. Sometimes it works, sometimes it doesn’t. But it’s always honest. And my very hope is that someone who feels those feelings reads what I’ve written and says to herself, (or himself): “Wow. I’m not alone.”

    I love your blog. And thanks for subscribing to mine!

  6. Jody

    Wonderful post. I too have noticed how uncomfortable folks get when I am open about my child’s diagnosis. Some are hostile, and others like to tell me that it couldn’t POSSIBLY be accurate. I don’t know why autism is so threatening to others, but you are right. More of us need to speak up.

  7. Karen Vano

    Thanks so much for your wonderful writings! I really do appreciate being able to feel connected to you and others in our situation. I do want to say one teeny weeny tiny thing about isolation and our kids.

    My son turned 4 a couple of weeks ago. In my quest to find other parents in my same situation I have racked up about 5 mom-friends with kids with ASD at just the same age as my son. This is Los Angeles so it wasn’t too tough to find. This is where it gets tricky: of those 5 kids there is only 1 other kid that is nonverbal like mine. The other nonverbal boy is also reaaaaly mellow and goes with the flow. His mom can take him places and he usually sits quietly. The other ASD moms are able to simply tell their kids to calm down or be quiet. They all have different spots on the spectrum. So, what Im saying is that even within a whole group of other moms of kids with autism- it STILL can feel really isolating because everyone’s challenges are so vastly different. But I keep on trying and I stay connected to them even when I feel like they won’t understand my particular issue,etc. They agree that its useful to occasionally send text messages to each other that say “autism blows” and when we get them we smile.

    Thanks so much for being some web-based glue that helps bring all of us together and if you’re ever in Los Angeles- you can rest assured you have an entire posse here waiting for ya!

    Karen

  8. Stacy Duval Woodruff

    I’ve been fairly fortunate to have several friends who have autistic kids, so I have people who will talk to me about it. Also, I have worked in a special needs classroom before, so that prepared me as well. I knew more about who to contact and what resources were available. I can’t imagine trying to go through this without any support or background knowledge.

  9. Ann

    I am so impressed with how you are able to write down exactly how I feel or have felt over the course of my son’s 17 years of autism. I found your blog on a support website and will definitely keep following it! You are a true inspiration to me and I hope you keep doing what you are doing. God bless you and your family!

  10. Rachel

    I’ve been feeling the same way…I just want to add that I am angry that Autism is such a business!! after all the advocacy I doing the Evidence Based Practice, implementing at home(finally homeschooling) out of unconditional love. I do not receive a paycheck…If someone is willing to make money off autism remember people with autism are the reason he or she has food in his or her mouth. Yes Anger is what I am feeling this week, but I don’t like to go down alot..because it takes away from the energy I have to love and care for my child…

  11. mendicant

    I like reading your blog because you’re honest and inspiring.

    I’m not in the same situation as you but I can completely relate to what you’re saying. It can be very hard dealing with family and “friends” who have nothing but negative things to say or a total lack of support-at the very least an attempt to understand would be nice.

    That’s not to say that they don’t or can’t have legitimate concerns. I really try not to get too into detail with people like my wife and child because I don’t want to put them out there like that so I can get see that point and like you said, point taken.

    Keep your head up and keep fighting the good fight. Even if there’s just one person that you’ve reached out to and helped I’d say it’s worth it. Adapt, change and grow but don’t stop. If you don’t don’t speak up for you and yours, no one else will. At the very least you know that you have people around the world who read your blog and support it.

  12. Ann Burt

    First off, let me say that I think you totally rock. You are on the right track completely, don’t change a thing you are doing. I am the mother of a 21 year old son who was diagnosed with ASD when he was 10. The path to that diagnosis was, well, I’ve just deleted a bunch of stuff. Suffice to say it was a decade of an emotional hell (and physical too, as a toddler he would bite and hit me) I wouldn’t put my worst enemy through. A bit of background, my son is lumped with the Asperger’s group, but really is more Non-Verbal Learning Disorder, with a plethora of other symptoms thrown in for good measure. He can’t be put into a neat diagnosis, but we tell people who ask that he’s aspy so they can get some sort of grasp of what is going on with him. We were thrilled when he outgrew the ADHD part around 15, and now is just ADD. He is the middle of my 3 children. We live near a “big” city, and have some resources available, so over the years we haven’t been totally without somewhere to turn. But – after 21 years of being this kid’s mother, I am still speechless when I reflect on all of it. The “professionals” who don’t know what they’re talking about, the “therapies” that are snake oil at best, how little understanding there is of autism in general. (As a side note, I’m willing to concede that ASD is complex and multi-layered, and you do need to be a rocket scientist to see the whole picture.) The reaction of family and “friends” to our son and his issues, the isolation from and judgement of our friends, family and total strangers.

    I could go on and on, but I won’t for many reasons. Right now he is in community college and they have a special needs department that honors his IEP, and he’s doing OK. I never thought there would be a day when I could say that. He’s doing OK. We are all OK. I’ve included my email here. If you ever want to email me with a question I’ll answer it and give you resources that helped us the most. Don’t give up. Get help from someone. Remember you are your child’s most effective advocate. Don’t wait for someone else to do it for you. Don’t expect the schools to know what they’re doing. Your child and his/her issues are unique to their ASD and you know best what works for them. Keep trying keep trying keep trying. On those days when you can’t do it for one more minute, shut the door and do what you need to do to get back to where you can get up and start over. You are the expert on your kid’s ASD. Best of luck to you, I will be thinking of you.

    1. Jen

      Ann, I appreciate your encouraging comments. Seeing the few issues you and your son have dealt with, paired with “he’s doing ok” is wonderful to hear. My son also has ADHD (among other things), and I can only hope that one day he is “merely” ADD. And you’re right: each of us is the expert, the ONLY expert, when it comes to our own children.

  13. sandytilton721

    I am your friend and I don’t care who knows that I associate with you and your beautiful children. That is just me though. We do live in a small town and while everyone knows everybody else’s business, no one wants to believe that anyone might know thiers. I can help you create some interesting ‘code names’ if you like. (insert evil laughter) Blog on dear friend.

  14. Ilene Martin

    You are so NOT wrong. I am the mother of an adult who has Cerebral Palsy and is totally dependent on my husband and myself for all of his care. I experienced a lot of what you are going through right now, but, believe me, life changes and so will the people in your community. What you are doing with your blog is terrific. Keep it up. You may find yet another young mother who is searching for support and is in the same situation as the one you met at the doctor’s office. A support group is a good thing even if it only contains the two of you. You can be an outreach for others; you never know. I’ve been “through it all”, and, knowing other mothers and or fathers are with you and needing you are the best support ever. Be proud of what you are doing; don’t let the turkeys get you down!

  15. karen

    First of all I am so pleased that you have found someone in the same boat as you within your own part of the world. Because whilst it’s nice to have friends all over the world, nothing beats sitting down with someone and having a cup of coffee/tea and setting the world to rights. Secondly I love your no nonsense, tell it as it is style, and that may be one reason this blog is so popular. Thirdly I applaud your comments that ASD is seen as needing to be swept under the carpet and not spoken of. The more people are told about it the more they will understand it. And then maybe families with ASD children needn’t feel so alone. Bravo! Bravo!

  16. Teresa (Embracing the Spectrum)

    I haven’t gone viral yet and I’ve been writing since August. How did you do it?

    Anyway…

    I worry on a daily basis that parents of children I teach or people in my school system will see what I write. My honest words. And balk at it. Which is why I don’t use our real names. However, my pictures are there for the world to see, so I’ve put myself out there. And I’m sure that I will wind up sounding off about the school system at points in times, as I do feel the resources we need AREN’T there. But I’m going to fight the good fight for my son. Because he deserves to have his needs met, and so do all the other children on the spectrum.

  17. Lelah

    I’m not too much further than you in our journey, but let me tell you something that every parent with an ASD child discovers: you need a thick skin. We’re not talking elephant like, but Presidential car bullet proof x2. You have to make decisions where there are no clear paths to follow–“If you’ve met one person with autism, you’ve met one person with autism”. Many times even when you’ve made a decision that isn’t going well, it was still the best decision. You have to learn to trust your instincts and ignore the stares–and comments. People who haven’t been there don’t understand, even if they want to or are trying to. And many who are down right hostile, are just afraid. Nothing is scarier than something that doesn’t have a known cause, or cure, or clear form of treatment. Many on the spectrum have a limited understanding of the neurotypical world and the neurotypical world has a limited understanding of them. How many times as parents of an ASD child have we just wished we knew what they needed/wanted? Just remember, education can solve the world’s problems.

  18. Em

    Firstly, may I commend you on a wonderful blog. You write so well and express your thoughts so clearly that it is always a pleasure to read.

    Having previously taught in a school for children with autism, I whole heartedly agree with how debilitating this hidden disability is. Even those children who are verbal can suffer terribly with the feelings of isolation brought on by their difficulty in understanding the obscure rules of social interaction that ‘neuro-typicals’ take for granted.

    I do take issue somewhat with your use of the term ‘life limited’ though. Not so much as to be offended – I certainly don’t want an apology. I simply want to open your eyes to a whole new world of disability that, if I’m honest, I genuinely never knew existed before the birth of my son. At nearly two years old he continues to remain undiagnosed (another area of disability I never knew about) yet functions at about the age of a 6 week old baby. Hospital forms and letters regularly state in black and white that he is’life limited’ and ‘life threatened’. This is not the same as being limited by your disability. This is not referring to the fact that he may never sit unsupported, is unlikely to walk or talk, never mind be able to take care of his personal needs. This refers to the fact his life span is limited. This means that they don’t expect him to live past childhood. This is heartbreaking for us and for all the other families in similar positions. As I said, I never even considered that parents had to live with that knowledge about their child. It is terrifying.

    I hope you understand my comments are not meant to be argumentative – it is horrible when parents within the special needs community begin attacking each other for the use of one word or another that causes offence or for the order of words used (child with autism vs autistic child debate). I just wanted to point out how awful it is to live with the knowledge that your child’s condition is, in a very real sense of the word, life limiting.

  19. Elizabeth

    Synchronicity is in the works here. I had just “gone off” in a comment to a news piece about a young single mom who was threatened with jail because her son had been tardy too many days and the tardies had turned into absences. Must have hit a nerve with me. I was incensed at society’s ignorant take on the whole Autistic Spectrum notion and what is best for families diagnosed with being on the spectrum. It is difficult enough navigating the course in an NT world, but do they have to work against us so? Drives me insane! I am all for transparency and tend to overshare, but like you, feel it is essential to reach others who are feeling isolated and misunderstood and shunned. I love your blog. My son was just diagnosed a few weeks ago at the age of 13 despite my long time belief that he was on the spectrum. I think what it gave me was a license to be outraged! I, too, wonder if I say too much and do not want to put him in the spotlight as he does not want his diagnosis to be emphasized. But I’m dealing with this too. I’m a single mom (always have been) and am weary of all of the uninformed prejudices I’ve witnessed in our society. I’m just a beginner when it comes to really understanding Autism but I want to learn. I want to help enlighten others. I’ll make mistakes, I’m sure, but for me the best place to start is to hear from other moms who are also trying to navigate the NT waters in an Autistic boat. I actually believe the Autistic boats are going to fare the best in the long run. Keep on bloggin’, I’m right behind you in a very similar boat. :)

  20. Debra

    Awesome that you’ve found such a following so quickly! So many of us parents have experienced what you are writing about. I’m a single parent with 8yo twins both on the spectrum and I can relate to your feelings of isolation. I lost the majority of my support system because of the kid’s diagnosis.

    I couldn’t agree more about transparency. Some of our children are high enough functioning that they could “pass” for typical with people who don’t spend much time around them. However, just like the blacks who “passed” themselves as white in the early days to avoid racism, it might help them personally but nobody else in the autism community benefits. We MUST make more people aware, more people tolerant of public displays of our kid’s “quirkiness”, and more people supportive of families living through this.

    I want to show you the awareness cards and t-shirts I’ve designed to help parents while we are in public…and yep, that’s my son’s face in those pictures. And no, I didn’t create these to get rich! I created them to help myself & other parents of autistic children advocate. The little I might get over cost will go toward the 4 therapists per week per child that we currently see…mostly out of pocket.

    http://www.zazzle.com/newdaygardensgifts*

  21. Joanna K-V

    So happy you and those with whom you connect have found this online option. Autism is not so stigmatized in my community BECAUSE of people who have stepped up and spoken out. Educating and demystifying autism to the community is A HUGE step in connecting families with autism together and within the community. I work in our local school district and when I was first in contact with students with autism, it was VERY hard to help them socialize. Typical peers had so many questions about their classmates with autism and I was stuck not being able to answer those thoughtful questions due to confidentiality with my students. That’s when I decided to speak out and up in my community (via autism awareness presentations, information booths and even preaching at my church). I can tell you that those who come into contact with me don’t have a choice to “be aware” anymore because I educate them. Blogs, online sites and news media outlets are making this possible. No one should ever feel or be alone in this so keep on speaking out. I don’t have a family member directly impacted by autism, but working with the many students I have in the past 12 years (most of them non-verbal or effectively non-verbal), I felt like they were asking ME to step up since their parents were so busy wading their way through behaviors, therapists and insurance while trying to stay employed and raise a family. THANK YOU for doing your part to increase autism awareness. YOU WILL find that opening this door will open many more doors of opportunity in this regard. My doors have not stopped opening since my “aha” moment many years ago. Take care.

  22. MarsupialMama

    This online community is definitely a life saver!!

    I love your writing!! I’ve been lurking a lot on your site and have been enjoying everything I’ve read here. You really have a way with words, I’m angry right along with you for that poor mother in the waiting room. I agree with you too, we can do better, we have to do better!!

    You’re doing amazing things though with this blog. I hope you do start a local support group, that’s really inspirational. **standing ovation**

  23. Brenda

    I understand how a lone u feel. My 6 yr old was diagonosed w/Aspergers three weeks ago and when the dr told us my world became dark. I felt totally alone did not know where to turn. I am a believer in God however I felt like God had even abandoned us at this time; but he had already set peoiple in my path w/o me knowing it. I happened to have a friend in IN (I live in TX) who works w/special needs children she put me in touch w/ a very special lady who walked me thru some dark days. Once I got thru the grieving part I was able to diegest some info she sent me. Then I went to the book store and bought books not just for me but also my son. However I have an underdstanding family I can talk to and the reminded me that I was not suppose to have children so the two I have are miracles and that God knew exactly where he was placing them (my baby who is 3 has 80 % chance of having aspergers) when he gave them to me. I had forgotten the joy of hearing the word u r pregnant. My boys r very special to me & if people can’t understand their condition after being educated then I didn’t waste my time. However I can’t say that I have ran into that because when I ask for prayer my friends from different parts of the county reach out to their friends & I log onto their fb & see their encouraging words. One really good friend is a comedian raises money for autism every time he can . Stand up for Austism & he suffers from really bad MS but he’s out there every time. I am sorry that u do not have support in your area. I have found mine on fb thru my friends &they hooking me up thru the right channels. I hope u can find it the same way. By the way my son does not qualify for anything in school because at school he can hold it together and he is an A/B honor roll student. Well he has a great teacher that works w/him next yr he may not have that so we may see that he needs a behavioral plan. Our school district does have a support group once a month. My husband JI be attending that. I hope u find what u need Brenda TX

  24. Wanda Argo

    I have a Face book group called “Sisterhood of the Autism Mothers.” If you are not in it, you should be. My ASD son is 27. We are NOT ALONE after all. I, too was amazed at how many people I have connected with all over the world.

    1. LuAnn Ranalet

      I’m interested. My son is 17 and autistic and boy have we been through some rough times. My husband/his father died two years ago and my son had such a rough time; breaking windows, light bulbs, television, and attacking me. He is doing really good at this time. My daughter in college helps me with him when she is home from school but most of the time it is just him and me. I do enjoy being with him and have no desire to have “me” time others have suggested. I am still having a hard time accepting my husband’s death and I need my son as much as he needs me. The only time we are away from each other is when he is in school and I am at work.

  25. yoongz

    Thanks for being who you are & for writing this blog. Thank you for being so honest & bringing autism into the limelight – which is high time someone does. You are not doing anything wrong – you are being honest & honesty scares people because it forces them to look at themselves & their attitudes/beliefs. Do not stop rocking blogospehre with your writing! i love reading it!

  26. Tina

    This post made me angry. While I can understand some people do not want their lives to be published, they should be ashamed of themselves if the reason is that they don’t want to be publicly associated with a child with ASD. I would hope that these people do not have the audacity to make these comments – and to have a facebook page/presence where anyone can tag them, check them in, post comments, photos etc, which most people seem to have these days. I live in Brisbane, Australia, and ASD seems to be accepted better here than in your town/country. There is a website called meetup.com perhaps you could search for, or start up, a local meetup/coffee group for families/parents of ASD kids.

  27. Jessica (@jessicaesquire)

    I think you’re doing great. Starting at blogging can be kind of terrifying, especially whhen things happen so fast. I’ve been doing the same thing for nearly a year and I’m still nowhere near as followed as you are, but I’ve still had my own share of stumbles.

    Just fyi, I think anonymity is pointless. Everyone is outed eventually. And when you’re really trying to build community and share with your blog, I can’t see why anyone would think it wrong for you to share your and your family’s real lives.

    The good always outweighs the bad. I just wish I could scoop you up so you lived where I do, so you could see my Ped and get the services we’ve been so lucky to get. And if people like you and me and all the rest are more open about it, maybe eventually there’ll be less of a stigma and more opportunities. At least with our little online community we can get something out of it. And even better if you can find people locally!

  28. mrsgas

    Thank you. I really appreciate what you are writing. As Mom of a lovely 12 year old ASD daughter, I respect where you are coming from and understand how you are feeling. Thank you for reaching out.

  29. Christina Armstrong

    I have a son with Aspergers – he is almost 21 years old. Over the years we have struggled with people and their opinions regarding his diagnosis – which we didn’t get until he was 12. We lost friends and some family members over this diagnosis. At first I cared and cried, then I fought for my son. I too share my stories and the details of my sons issues with anyone who will care to listen – sometimes even if they don’t want to listen. I have changed some people opinions about Autism and I am proud of that. I am a huge believer in disclosure and transparency – it is what got my son through mainstream school right through to year 12 here in Australia. He is now working in a government job and feeling real good about himself.

    there are times when I have talked about experiences and people have worked out who or what I am talking about – especially in the case of a previous school – at first I tried to be diplomatic and not stay outright who they were…..then I thought ‘No they have contributed to making ours and our sons life hell’. I did not want that to happen to anyone else, so I was determined to get information out there so that others did not suffer as well. Because they were in the wrong – they could never complain. If people don’t like what you are saying about them then just say that you are using the experience as an educational tool – and hopefully it has educated them about what NOT to do in the future. Generally when you are giving praise no-one complains it is only because they are made to look bad….Well too bad, too sad….our children are made to look bad all the time….

    I like to think that as parents we have always done what was necessary to help our son and hopefully by talking about his issues to others in the community then they will understand more and perhaps not judge as much. It is the judging by others that is the hardest to handle.

    Stay strong and continue with your blog, I find it refreshing to see yourself and many others discussing issues and helping each other. Support groups of all descriptions are needed and wanted by all of us at different points of our lives – they are essential to our sanity and our childrens well being.

  30. mamacarlson09

    Great post! I think people need to be made more aware of how isolating it is having a child with delays, whether it be Autism or something else. I have found so much support online, as well as great resources to help my son be the best Trevor he can be. Without online support groups and blogs I would feel lost. And I wouldn’t be as well-informed as I am either. Now when I go to doctor appts. I can speak knowledgeably. Don’t ever feel you need to apologize for doing what is right for you and your family, as well as what is right for so many thousands of other families.

  31. spicyt

    I think what you’re doing is a wonderful thing! I think its a gift to your children and all of us who have children with ASD should be standing proud together! This is not some nasty contagious disease and people need to get that thru their heads!

    As I said on my other post, my dtr is almost 18 and had high functioning Aspergers and other learning disabilities. She is gorgeous to look at, sweet, innocent, naive and gullible…she thinks everyone is nice and sweet and like her…well I should say she USED to think this way, until unfortunately I HAD to teach her that not everyone is kind…when kids started recognizing she was different than them and started terrorizing her in middle school…she had to learn real quick how to defend her heart against cruelty.

    She can be with friends and their conversation just goes over her head…sometimes she can hide it, sometimes she can’t and then they call her stupid or other derogatory names…they once invited her to a sleepover…now mind you, these were girls she knew since first grade and this was Freshman year, and I of course knew the parents…but this group of little witches invited my baby there, and after she fell asleep they started talking about her, well Jess woke up, but pretended to stay asleep when she heard what they were saying about her…then they started putting glue in her hair, throwing crayons at her…Jess kept pretending to sleep, afraid they would do worse if she woke up! Then they dropped batteries on her head! Finally since she pretended sleep, they gave up and went to bed. Jess called me at 7am and asked to be picked up…which suprised me…but I drove there and she got in the car and burst into tears and told me the story.

    Well needless to say my brain about exploded with the anger I was feeling and the empathy or her little broken heart. I contacted the parents, who talked to the girls and of course all three denied all of it. There was no way to prove her word over the three of them, but why would a girl want to leave a sleepover at 7am in tears??? IDIOTS!

    These girls and others in their clan of morons terrorized Jess for 3 years, more really…even now as a Senior, they make fun of her, giggle at her, spread rumors about her….but now it doesn’t bother her as much…because I of course have spent every possible moment teaching her about bullying and cliquies and jealousy and self esteem, etc. Jess is beautiful inside and out, always dressed very nice, and has a sweet boyfriend of 19 months…boys were a whole other teaching opportunity! lol…but this boy is sweet and more innocent like her…slow and laid back…they sit around the house playing xbox, watching movies…go to the mall…they never go to parties or cruise or anything. I have actually had friends tell me I should encourage them to go to parties and stuff….well no thank you…my daughter is not interested in that type of lifestyle, she went to a couple and there were alcohol with parents there and it just made her too uncomfortable and she chooses not to go…I applaud her for making such moral decisions! My mom says its cause I’ve spent her whole life teaching her morals and everything else Jess needs to know to live a good life…and I will take the pat on the back! lol

    On to the other “bully” in her life…the school system! Since 2nd grade all they wanted was for this child to be put on ADD drugs…and she doesn’t had ADD! I was a fool and put her on it for a few months but it made her feel jittery and yucky so I said NO MORE. The schools want to put millions into sports and swimming pools and crap…but God forbid they have proper teachers and tools for kids with learning diabilities!!! I won’t go to much longer, didn’t mean to go on this long, but suffice to say her yearly IEP meetings have been jokes…if this poor child graduates in May with the rest of her class, it will be because she and I have fought the fight of our lives to get her thru!!! She still really doesn’t have the skills she should. Forget math and making change…this is stuff I’m still working on with her. Still working on social skills, practicing job interviews, how to check out groceries, cooking….just the skills of living. That diploma wont mean she has a 12th grade education really, but it will mean she tried her best and she got thru it. We know she will not be a doctor or lawyer….she wants to be a cosmotologist…and that is a goal we might be able to make, or a vet tech…but I know life will always be harder for her…she wont’ always fit in, won’t always catch the jokes or follow the latest news events…but I know sh’es a good person, caring, loving, responsible, loyal, honest, funny, fun loving and shje will be a good wife and mother…sshe is a happy young lady…and doesn’t even recognize when people are being mean to her half the time…lol, so I think she will continue to live a happy life, even when I’m not around to protect her…

    But your blog and others like it, is what will help to knock down these dumb walls…keeping disabilities a secret is silly and detrimental to the kids. so I applaud your blog! Keep up the great work! Your kids will be proud of their mom!
    Tammy

  32. Fi (Wonderfully Wired Mum)

    I loved this when I first read it: ¨ When your child is diagnosed with cancer, neighbours stop by your home bringing precooked meals, hugs and support. When your child is diagnosed with Autism, families who see you in the supermarket will slip away down another aisle.”

    Dr David Feinberg 2007

    It’s so true isn’t it!

  33. Robin

    Welcome to the rollercoaster ride of navigating life with a child that is on the spectrum. I’m so sorry that there are not better resources for you in your area. My son Finn is almost 5 years old and mostly non-verbal with some emerging speech. It can be very frustrating when you are unable to find the right program for your child, I know because we have been there. For two years Finn had piece-meal services because that was the best we could do at the time. The county where we live would’nt even approve speech for him in early intervention….the sad part is we had early intervention for Finn beginning at about 9 months since he was a micropreemie & had gross motor and fine motor delays. We have very lucky since then as Finn is now in his second year at a preschool dedicated to children with autism. My lovely little boy rides an hour each way to and from school & then has two additional hours of ABA therapy five days a week which makes for a very long day for such a little guy. He takes it all in stride and then some! On his days off he drags his backpack around and says go until I explain there is no school today. We have been blessed to have found such a wonderful program to enrolled him in, and I have to say his progress has been amazing since he has been there.

    If there are any words of wisdom that I would share, it would be that from my own experience do not treat your child different in the sense that you must be firm in what you do and do not want him to do. I always explain everything to Finn, I think that sometimes people tend to underestimate what he is capable of. Even I find myself doing things for him that he is capable of & have to stop myself and turn it into a learning experience for him by prompting him to try and use his words. Sometimes he says it right and sometimes he doesn’t, but he will never learn if I don’t try and persist. I am also a firm believer in persisting even if a situation makes him uncomfortable. For example we took Finn to see Celtic Thunder in concert. He LOVES them! He owns every one of their Dvds and watches them constantly, so you would think piece of cake right? WRONG! First there was the two hour bus ride….mostly uneventful except that we were back by the bathroom & everytime someone would open the door to go in or out he would try to close the door on them! Okay, so it was pretty funny I have to admit! LOL! So we get to the concert & had to wait in the hallway before they would let us in to sit down….for about 45 minutes! Can I just tell you that was the longest 45 minutes of my life? He was NOT happy! When we finally got inside I sent dad to go get him a program figuring that would keep him busy until the concert started. Oh it did, busy dropping it down behind the seat in front of us! It was no easy feat getting it out of the crevasse from our side about a million times. Then the concert started. He was having a hard time seeing & the girl jumping around in front of him didn’t help, but he started getting upset because I was holding him because I didn’t want the people behind us not able to see. We finally made it to intermission and were okay until the woman behind my husband, who by the way had been sympathetic early on and identified herself as an educator, was completely and utterly a rude b**** to me about the situation. I have to insert here that she was the ONLY person to complain. My husbands first instinct was to get all aggravated & cut and run because he was embarrassed. I had to explain to him that there would be plenty of times that Finn would be in situations he didn’t like and that if we set the precedent by leaving he would think that he could always behave like that and we would just leave….they are not in any way shape or form stupid! In the end it was fine because I went and spoke to the ushers about the situation and about moving to an area where no one else were sitting and they let us. So we actually had better seats! Eventually he was able to calm down, and even enjoyed waiting around the building outside on the sidewalk to meet the band afterwards. The funny thing is that all along I thought the being in NYC with all the noise and cars would be what set him off & that was the part he loved! So you really never know…you just learn to roll with the punches!

    One of my favorites sayings is “don’t worry what other people think, because people are going to talk no matter how good of a life you live & the people who really know you know the truth anyway” and that has become my mantra now more than ever!

    Good luck & best wishes!

  34. Elisabeth Williamson

    Continue to put it out there! Discomfort happens in learning and people need to learn. be reminded that every fight to acknowledge something as important has been a struggle and brought discomfort to people. At this time I am reminded of the Civil Rights movement that caused great discomfort, but it changed the way we view all races, in the same way, albeit on a smaller scale, the discomfort people feel by you putting your thoughts about ASD , exposing your children or child to the world and the world to them, comforting those who battle alone without support is of importance to educate, to broaden peoples vision of what is needed for all children.

  35. Cindy Keller

    I like transparency! I think you’re on the right track and are doing a good thing–for yourself, your child, your family, and the world of people with autism! You go, girl! I am an almost 55 yr old woman currently in college working on a degree in elementary ed/special ed; I know I will more than likely have students in my classroom who have been diagnosed with autism. I have 6 children, none with autism (although dyslexia is another matter), so I appreciate gleaning insights into the world of the person with autism and their family from people like you who share the good, the bad, and the ugly. I want to be the best teacher I can be and what I learn from your blog is invaluable!

  36. CarolSue Baird

    This is beautifully written. Please stay as honest and transparent as you can. I feel stigma from family all the time, who just don’t get my special needs daughter(Not Autism). I explain and explain and they comment like “oh, she’ll just grow out of it!” Then they blame my parenting choices for her behavior. I am glad you met at least one other person around your area who gets you and your family’s needs. I joined an on-line support group and am about to get more proactive. You are very inspirational.

  37. AWildDog

    Sigh, I don’t see how one can be ashamed of their own child – especially when as parents they should understand what’s “wrong” with their child.

    People are so judgemental sometimes, it makes me so angry.

    Since your blog has gone viral – maybe you should use it to rally people to talk to their local MPs about issues they are facing.

  38. B's dad

    I think your blog deserves celebrating for all sorts of reasons: its honesty, its ability to reach out to others, the fantastic writing and, most of all, for the generosity you show in taking your own experiences and turning them into such a worthwhile thing.

    Keep up the good work. You are an inspiration.

  39. robinbjames

    First of all – I think that your blog is amazing. You are sharing the struggles and joys of having a child with autism. You are asking the RIGHT questions. For those of us that have experience working with kids who are autistic, most of what you are writing isn’t a surprise.

    Second – I think that a number of things have really impacted the way that people view autism. The vaccines as a cause fiasco. The hype about specific diets. The improper diagnosis of autism. You know what I’m talking about.

    Third – Autism is SO complicated. You can work with 10 children who have been diagnosed with autism and you have 10 completely different sets of challenges. People have a hard time understanding that each child is different. Autism isn’t like Down’s Syndrome – there isn’t a set of characteristics that tell the world that the child has a disability.

    Working with students with autism is a challenge beyond belief. Over the course of 5 years I had the privilege (yes, Privilege) of working with a number of kids with autism. One was a beautiful sixth grade girl who, when agitated, would tear her clothes off. One first grade boy who had didn’t speak much, but was way ahead of his peers in math. Another first grade boy who was just sweet as can be. One eighth grade boy who needed to be restrained and caused injury to a number of adults. There was a second grade boy who was extremely verbal, but would pull his pants down when he was distressed or destroy a classroom. And another boy, who was in fifth grade, who was also very verbal and would argue with you about EVERYTHING. I can’t imagine how these parents deal with the enormity of their child’s challenges on a day-to-day basis.

    But then there are the parents who push for an autism diagnosis instead of honestly dealing with the behavior issues their child has as a result of their parenting. A third grader who throws tantrums isn’t necessarily autistic. Not when he is manipulating those around him to give into his demands. When he is able to get himself under control as soon as he is given what he wants – that is not autism. An child with autism is unable to clam themselves down that quickly. Then a child doesn’t show any self-stimulating behaviors, can make eye contact without a problem, can communicate without difficulty, understand the social/emotional aspects of a relationship – that is not a child with autism. But this is a child whose parents managed to manipulate the system to get this diagnosis, in my opinion, so that they don’t have to deal with the reality of the results of their parenting without imposing any limits on their child. This child pulls resources from children who have difficulties with learning and could use help. And this child is NOT autistic. He may have behavioral issues or not (I’m not qualified to diagnosis), but I can tell you that this child is manipulative and purposely mean. Those are not qualities that you would find in a child who is autistic (difficulties understanding cause and effect mean that kids with autism generally don’t have the capabilities to be manipulative).

    It is kids like this that cause educators to throw up their hands and say that they’ve had enough – not the kids who are truly autistic. And in my opinion, this is what gives autism a “bad name.”

    Please don’t beat yourself up for your blog. It is needed. It is genuine. No one call tell you what you should think or feel – and you are entitled to share your opinion. And I say to heck with anyone who doesn’t understand because really, they aren’t your supporters anyway. Sprru this is so long. I guess I had a lot to say.

    1. Ann Burt

      Well said Robin. I have a 21 yr old with ASD. Seen so much of what you’ve written here. I think a further complication is because there is no obvious defect, my son is attractive and seems fine, people don’t expect and don’t believe his issues. I’ve had family members tell me there is “nothing wrong” with him. When he was younger I had family and total strangers tell me he just needed discipline. They could not understand a complete melt down because he “felt the threads in his socks.” So unfortunately, because there are parents who don’t want to set boundaries and really parent, all of us are lumped into the same group, and this condition is misunderstood and used to advantage by lazy parents. That is really one of the main reasons ASD is still viewed with so much skepticism. Also, people want something or someone to blame, so they blame vaccinations, or bad parenting. Happy to say that in my family they have finally come around, but it took over 10 years. At a family gathering when my son was about 14, an in-law of my sister’s was at dinner with her very severely disabled child (birth injury, wheel chair confined, 30 years of age with development of 9 month old). Everyone was concerned and helping, observing they carry this huge burden with much grace. Half way through the evening we were talking, and in front of my family (there must be angels!) she said “You’ve got it way worse. Everyone sees our burden and helps and offers sympathy and encouragement. You are just judged and criticized, and your son is shunned. What keeps you going?” I almost lost it. It took someone with her experience to voice the pain we had been living. Thank you for working with our kids. Thank you for getting it.

      1. robinbjames

        Ann – I couldn’t get a job working with the kids with severe disabilities. I tried for almost 2 years. I have my Master’s in SPED with a 3.98 GPA and 5 years experience as a paraprofessional (working with severe kids) and 4 years as a preschool teacher. I couldn’t even get interviews. And while my heart will always be with the kids with severe needs, I took a job teaching Mild/Moderate High School Students. I just finished my first week and I love it. I miss the kids with severe needs, but am finding that this is an amazing place for me to be. I do have a couple of kids with Asperger’s. . . You can check out my blog at http://www.landamongthestars.wordpress.com – I talk about my experiences trying to find a SPED teaching position, etc.

  40. Kathy

    well said. Thank you. I’m relatively new to the Autism diagnosis= though My child has had it all along- diagnosed at 14 b/c he has another issue that little it known about. The powers figured it was all related to that. Anyway. well said.

  41. cutemongoose

    You are doing GREAT. Don’t stop. If you start worrying too much about what others think you will start censoring yourself.

    Keep up the great blog!

    I have always been VERY open about my son’s diagnosis, both with others and with my son himself. Now at 11 1/2 he is a very self-aware kid. He can explain his various diagnosis accurately. He can tell you what meds he takes and why. He can self-advocate. He is not embarassed that he is on the autism spectrum and that he has tourettes syndrome.

    I, the proud Mama, am thrilled that he is so verbal and so high functioning. I never would have imagined we would get here when he was dx’d with HFA at age 3 1/2.

  42. Jenna Kurtzhals

    Your honesty is just what we can ALL relate to and what made your blog go viral!! So many people are afraid to speak the truth!!

    Autism is a double edged sword!! Through autism I have discovered truly beautiful things in life and unfortunately……… we all know the ugly side of it!! All we can do is stand together, shout from the rooftops to spread awareness and keep breaking down doors to get our kids ALL the support they need and deserve!! There are good people out there you just gotta scream loud enough until you find them and when you do find them, hold them close and don’t let them go!!

    Thank you so much for your blog!! Keep fighting the good fight!

  43. Christine Guth

    I posted a link to your blog in the private Facebook group for our local autism group in Goshen Indiana, and pretty soon others were sharing links to your posts. We CAN relate to the stories you tell. You tell the stories we have lived.

    Those of us who are able to share must be transparent and tell our stories. This is the only way we can attack this terrible stigma that isolates people and keeps them from the support and help available.

    Five years ago, a couple of parents started putting a free announcement about a support group in four area newspapers every month. Now we have a support group of hundreds of parents in our community who know they are not alone. Thanks for your efforts and global AND local awareness. Together we can take this stigma down.

  44. Anni

    I too kept my son’s diagnosis a secret for a couple of years. I finally became angry enough about it that I started to tell everyone I met. I am proud of him! I love him more than anyone. He faces bigger challenges than we do. He is the one experiencing the discomfort of autism and everyday challenges of trying to communicate his needs. He wants to be around people and he wants to participate and talk, he just can’t. It’s hard for him and as isolated as we feel, so does he. Anyone who thinks he’s embarrassing should be embarrassed for being intolerant and not understanding. It’s just not normal to be intolerant in this day and age.

  45. aspiegrrl

    Dear Flappinessis, I love that you’re courageous enough to speak up and about ASD. It is hard to put yourself out there but we really need all the education and awareness that we can get! We’ve come a long way, but yet there is much that must be done. Thank you for joining the cause. And if you would care to peer into the mind of an adult with an ASD blogging and putting myself out there, please stop by my blog. I’m following yours for sure! :)

  46. karen

    Thank you for your honesty. I just found this site and readily joined. I too am the very frustrated of a wonderful child blessed with special abilities. Our family has learned and is continuing to learn the many ways to get through a single day. No two days are ever the same. We can not deal with the same situation in a same manner as we need to navigate the world without maps and guidebooks into the ways of our daughter/sister. But just knowing that there are others out there helps in a small way. I too wish there were more people who would stand up and shout it from the rooftops: autism is not contagious! Our child just wants to be happy and have friends like your child. If she were two it would be ok to wear pull-ups. But, because at 12, most other kids are fully trained, we have to hide when there is a problem in this area. Can the world just accept our kids with open arms? I look forward to reading more from this group and hopefully finding a flesh and blood person out there with whom I can sit and chat over a cup of coffee/tea, while our kids attempt to play side by side (dare I hope together?). Anyone out there in the Ithaca, NY area????

  47. katiebachmeyer

    If you have time, I would recommend you read another blogroll, most recently posted is a story by an organization encouraging better cooperation between “paid staff” (teachers, support providers, etc), and parents… Part of this cooperation means opening the doors of the world to people with disabilities, not closing them in to one “disability world.” Thanks for your post. http://cincibility.wordpress.com/2012/01/07/kansastrophe/

  48. Teresa

    I wish you good luck with your family’s endeavor. My son was the first in the entire school district diagnosed with Asperger’s Syndrome. I suppose you could say he was breaking new ground; the school system had no idea how to handle him. My son is now 25, and his father still insists that he is just spoiled, and there is nothing else wrong with him. One thing that helped him some during school was a para (para-professional), who went to all his classes and activities with him, and acted as kind of a buffer.

  49. Flannery

    Hey there! Just found your blog. Nice job, and you’re off to quite a great start!

    I too share your frustration and anger over the lack of “community” out there for us. I can’t tell you how many times I’ve felt the sting of embarrassment out in public with my son, quickly followed by the sting of guilt for letting myself feel embarrassed because someone else doesn’t understand the disorder.

    It’s still seen as some sort of flaw, which is different than a disease which is viewed as more of a “victim” scenario. We’ve got a long way to go.

    But this is a start. What you do, what I do. It’s a great start.

    Glad to have found you.

  50. Flannery

    Hey there! Just found your blog. Nice job, and you’re off to quite a great start!

    I too share your frustration and anger over the lack of “community” out there for us. I can’t tell you how many times I’ve felt the sting of embarrassment out in public with my son, quickly followed by the sting of guilt for letting myself feel embarrassed because someone else doesn’t understand the disorder.

    It’s still seen as some sort of flaw, which is different than a disease which is viewed as more of a “victim” scenario. We’ve got a long way to go.

    But this is a start. What you do, what I do. It’s a great start.

    Glad to have found you.

    (delete my last comment, it used my wrong address)

  51. Storm Dweller

    My daughter received her diagnosis four years ago, and as a single mom I have run the gamut of doctors appointments and seeking services by myself that entire time. I’ve done the trial and error gauntlet of trying to weed out too much of a good thing when professionals start tossing me suggestions for various therapies that would probably be beneficial, but simply will not fit into life with school age children and 40 hour work weeks. Support is a hard thing to find.

    I tried attending the Autism society meetings here and found that it seemd to be divided into three camps, one camp was the GFCF diet advocates that couldn’t believe that I have not put my child on it yet, and do not believe that I have noticed no exacerbation of symptoms due to certain foods consumed, and that ALL Autistic children should be put on it. In fact they will go so far as to infer that I am neglecting my child by not putting her on that diet, and how dare I even call myself a mother.

    The second camp was (not to be denigrating) the “poor me” camp. They were there to seek sympathy, but didn’t seem to have much use for suggestions and support. I don’t dislike this camp, as I certainly understand how discouraging and overwhelming parenting in general is, and how much more so it is when raising a child with Autism. But I’m a constructive solution seeker in addition to the need to vent frustrations and woes. I can only handle so much sympathy before my brain just starts screaming, “I don’t need your sorrow, I need solutions!”

    The third camp seemd to be the “look at how much better my Autistic child is doing than your Autistic child because I’m such a great parent,” camp. Yeah, not my cup of tea there either.

    Support is difficult to find, and many days it does grind me down to feel like I am tackling this all by myself. The guilt of knowing that I do make so many mistakes as a parent hurts, and not just for my child with Autism, but for her two siblings as well. But, as one other lady that I connected with on the internet told, after identifying with all of the embarassing (being asked to leave or not attend events etc.) and challenging aspects of raising a child with Autism, the one thing she said to me was, “And I know I don’t have to tell you that it’s all worth it, because they have their amazing moments in which you are so glad you stuck it out for them.” And she’s right. It is all worth it, whether we shoulder it alone or not. The rest of the world has no idea what they are missing out on when they shy away from the word Autism. And I think they do so for the same reasons I did, and sometimes still do… a lack of understanding when it comes to what exactly Autism is and means.

    1. Ann Burt

      Hi. I could have written your response! My experiences with my 21 yr old mirror yours to a “T”, including the way I feel about the “support” groups. Most of what I found were also in three camps 1) Poor Itty Bitty S***** Me 2) Who can I blame? 3) Who is going to do the work and fix this? I’m not about the process, but about the results. Don’t need it to be a contest, just what has worked for you, what hasn’t, let’s compare notes. I think, so far, blogs/internet provide excellent support, especially considering how long I’ve been at this and how long there was absolutely nothing.

  52. Storm Dweller

    Thanks, Ann it was so hard for me to write that, because it’s hard enough that we get hairy eyeballs from all the perfect parents with perfect children out there, but when we start facing criticism with other parents going through similar experiences… it’s just so disheartening. I’m so glad to find so many people out there writing about their experiences though.

  53. Pingback: Autism Hero Highlights

  54. Jamie Rider

    Brava!! Keep supporting yourself & others by educating people. You provide a forum for parents to communicate. Keep up the great work!

  55. Jo

    Thank you for this post… And for your blog.

    I am not afraid of the “label” my two sons wear.

    My sons are incredible, and everyone needs to know that one is autistic, and the other has aspergers.

    They have been fearfully and wonderfully made. If someone has an issue with that… They can take it up with God – the one who made them!

  56. Naomi

    I don’t have a child on the spectrum. My best friend does. He was diagnosed before I met her. At first I couldn’t see it, he looked “normal”. I see things now because I spend time with him. He’s also a bright boy, friendly and loving. I can’t say I know how she feels but she knows that I’m there when she needs to talk and someone to listen. I’m also there with a drink and laugh when she needs that too.

    I’ve just started reading your blog, came across it due to someone else posting on facebook. Just wanted you to know.

  57. Mom of an Aspie

    I am the mother of a 20 year old Aspie daughter. We knew she had LD issues from a young age, but the Asperger’s diagnosis came out of a serious breakdown when she started college. Our lives–and especially hers–have improved 150% since we learned the underlying cause of so many of her issues (sensory, rigidity, meltdowns etc.).

    We weren’t entirely surprised because we have at least three nephews who have been identified as ASD (and one dad of two of the boys). We know there is a strong genetic predisposition to this. Within the family, we have been pretty open about the process we’ve gone through and what we’ve learned about our daughter’s “brand” of autism. We mistakenly assumed that other family members would welcome our frankness, especially since we’ve largely had a positive experience once the diagnosis was made.

    I have one sister in law, however, whose son has had all the work ups, save the final official “label” of autism, who is antagonistic, ashamed and raging against anything suggesting her 7 year old son is on the spectrum. The fact that WE exist, with an Aspie child, and we are okay with it, enrages her. She has said it is our fault for not doing GFCF, that we trust too much in conventional medicine, that we support “Big Pharma” and that if we had just been more aware, we wouldn’t be dealing with Asperger’s now. She cannot believe that there are any “gifts” or unique capabilities that HF ASD kids might have. She believes if she can continue with the GFCF diet long enough that eventually he will be healed and all will be well. She’s been doing it for 4 years with no noticeable improvement. I think it was a shocker to her when her DAN pediatrician told her she needed to start her son on Zoloft for his OCD/anxiety issues.

    I understand that she is transfering her frustrations with her own situation to us, but that doesn’t make it hurt any less. I feel we’ve reached a point where we can’t participate in extended family functions because she wants to pick a fight every time we are in the same room. It doesn’t help that her views on diet, treatment etc. have been embraced by other family members (those without ASD kids, BTW). She is projecting her shame and her grief on us and I have enough to carry without feeling like I have to be the spokesperson for the “Parents with Autistic Children” group. I think this is why I hide. I am sick of the confrontations.

    I find a great deal of comfort in these blogs because it helps me see that everyone has their own experiences parenting children with ASD. The truth is, my daughter is old enough that she will chose her own treatment and therapy plans–whether that is GFCF or Listening Program or medication or whatever. We support her in her choices. She has come to embrace her Aspie label because she sees how it has shaped who she is. If she is okay with her diagnosis, we certainly are. It is the stigma, attitudes and shame of others that I am tired of coping with. I would like to use my energy to MOVE FORWARD.

  58. Lisa

    I found your blog thru a facebook friend and I’ve been sharing some of them that I’ve read so far as well. For the more functioning spectrum autism kids, you’re so right, so many of us keep the information to ourselves. I haven’t told a single one of my family members, or even one of my best friends (not because she wouldn’t understand, but she wouldn’t be able to keep the secret). The school’s don’t help very much, the IEP’s aren’t good enough, but it’s the best we can do while keeping our kids in mainstream classrooms to help keep the secret and maintain a sense of normalcy for the children. Like so many others, no one would listen, it felt at times like I was fighting with everyone for answers, for help, for support with just not knowing what the answer was, and I don’t know about everyone or anyone else, but I am ashamed, not because of my daughter’s disorder, but because I was forced to make decisions that could hurt her later, to be able to get ANY help till we finally got a diagnoses. I was forced to get my daughter diagnosed as ADD (many asperger’s have the same symptoms as ADD I found out later), I find it odd in itself how that diagnosis is made anyway… to give someone that kind of medication, based on two people’s opinion… is nuts. I was told repeatedly that I was wrong when I suggested that she had a milder form of autism, that the things I knew were unique, were possibly from hormones, or maybe she just had her own quirks that all kids go thru but because she was able to show me affection, that she couldn’t have autism. No one knew then, or now, that many nights I have nightmares about my daughter’s future, that I’m so afraid of someone hurting her because she won’t know what to do if put in certain situations, that she will agree to nearly anything just to finally feel accepted… the list goes on and on and on about my fears but if I tell anyone about the diagnosis, to get help, I could only be feeding someone the information they’d need to hurt her. It’s emotional torture to just not know what to do, who to trust, and how to help our children in every way they need. I agree, we need better understanding, we need more information, more studies, more answers… more everything to help these kids become all they’re capable of becoming, given the right tools to help them succeed. At each doctor’s office that diagnosis these children, we should be able to put our names on a list so that we welcome other parents to contact us, to share as much support and information as possible… maybe a website that the dr themselves put up information so that people like me, who have read things, but aren’t sure what’s real and what’s not, can understand and know how to help because right now, I’ve got nothing… no one is helping her and I don’t know how to do it without fear of making things worse.

    1. Ann Burt

      Lisa, I’ve read your response and it makes me so sad. Why will you not talk about her ASD? Why keep it a secret? You say “no one is helping her . . .”. Of course they aren’t, you haven’t told them you both need it! Once I opened up about the issues my 21 year old was facing, it got much better. What do you mean by “feeding someone information to hurt her”? Information and being open doesn’t make it worse. It makes it better. Given what I read in your posting you are paralyzed by fear of the unknown. The “known” ain’t so great from what I read, at this point it’s obvious you need to change something, not only your sake, but most importantly, your daughter’s. I encourage you to open up, it can’t get any worse. It only gets better. After 21 years with my son, it’s not perfect by any means, but it’s so much better than it was the first 12 years. Our situations sound very similar. Take the advice you receive with a grain of salt, you’ll figure out what works and what doesn’t. Collect all the information you can from anyone you can. You never know what will offer something that really works. I wish you all the best. Please consider reaching out and not keeping “secrets”.

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