Dear Well-Meaning Individual: So You Know An Autistic Child, Huh?

They’re just like snowflakes; no two are alike.

Disclaimer:  I am not a scientist.  These are my own views, based upon my own research and perceptions.  The analogy I discuss below is one I shared with a dear friend of mine – who happens to be a doctor – and she thought it was a good one.  This is merely my way of attempting to convey the complexity of autism to lay persons.  If you want science, there are far more qualified persons than me to consult.  The Thinking Person’s Guide to Autism is a great place to start.  Those ladies are way smarter than me and speak the language of science.  And The Autism Science Foundation won’t lead you astray. 

 The other night, an individual (I’ll allow to remain nameless) called to tell me all about how she met a woman with a grown autistic son who was doing so well that he is able to drive to the grocery store.  She thought that perhaps I might want to meet said woman and see if the woman might have any “tips” or advice to offer me.  It was obvious to me that she thinks my son hasn’t made sufficient progress (him being three, not toilet trained, and using just a few words) and that I could use some help.  I ask for help frequently from parents of other autistic kids, but I resented the implication from this person that this other mother was the “success story” I could emulate – if only I were willing. 

Being of the sort who tries to articulate my thoughts, I attempted to explain why I wasn’t interested in all of her recent -and frequent -suggestions.  I tried to convey to her how many suggestions, cures, and treatments people have pitched to me.  I tried to explain why we decided to end biomedical treatment.  (It wasn’t working, and my views of my son’s autism and autism in general have changed.)  I tried to tell her that I have reached a point where – though I do believe in the benefits and necessity of speech, OT, and PT and do research other promising and tested new therapies – I have accepted that Callum is mostly going to be who he is already wired to be.  And that he is simply too young to assess how his individual brain wiring is going to affect his future.  It’s trite, but – in the end – time will tell.

All I got on the other end of the line was…silence.  The unmistakable indictment in silence.  I grew frustrated and began babbling about how I wasn’t really getting across what I meant.  Eventually, both of us tired of the awkward conversation and hung up.  I walked away unsettled.  Defensive.  Wanting to cry.  Knowing exactly what she was thinking.  She’s given up on her child.  She’s not going to try to keep helping him.  She’s a terrible mother, and he’ll never talk or have a normal life because of her. 

I’ve seen it in her eyes the few times I’ve seen her since then.  And, despite still believing what I said, I am haunted by her disapproval and my own self-doubt. 

There is a saying in the autism world – “If you’ve met a child with autism, you’ve met one child with autism.”  On the surface, it’s meaning is obvious.  Of course every child is different, right?  Most people would nod their heads emphatically at that statement — autism or no. 

But that statement means so much more than that. 

What everyday people who don’t deal with autism in their everyday lives think about autism, they think about it much like diseases of the body.  Diabetes.  Coronary Artery Disease.  Lupus.  Conditions that can be tested for definitively and carry a consistent course of treatment.  There are causes that can be identified, and symptoms that can be controlled via medications. 

But what everyday people do not understand about autism is that those who have it aren’t at all like those who have specific physical diseases.  There isn’t a typical progression of symptoms leading to the worst case scenario.  Finding the cause of autism is comparable to finding the cause of cancer.  Likewise, finding a “treatment” for it is equally daunting.  Why?  Because there is no such thing as plain old cancer.  Cancer is a vast array of diseases with a vast array of prognoses.  Just because you’ve been diagnosed with cancer – it does not mean that your chances of survival are the same as your neighbor’s.  Thyroid cancer is a heck of a lot better news than pancreatic cancer.  Ovarian much more devastating than minor skin cancer.  And those cancers still are comprised of different types.  Yet, we call them all cancer, right? 

Autism is just like that.  But it, like cancer, cannot be nailed down in terms of cause or even treatment.  A breast cancer victim will not be cured by removal of her prostate, now will she?  And the cellular events leading to her cancer are likely very different from the causes of the prostate cancer patient’s. 

What I’m trying to say is autism is not really one disorder.  That’s why its called autism spectrum disorder.  It is a description of a variety of similar traits — of highly divergent degrees of severity.  Some children with autism aren’t impacted with speech difficulties.  And some children will never speak.  Some will excel academically and earn graduate degrees.  Some will never learn to read.  Some autistic adults grow up to marry and have children.  Some cannot tolerate the touch of another human being.  They are not the same people, and they do not have the same disorder.  It just carries the same umbrella term.  What created the differences in the brain wiring of one individual on the spectrum did not necessarily create the differences in another.  The reason there isn’t a definitive “cause” of autism is because it likely doesn’t exist.  There are genetic links.  There are suggestions of environmental factors.  Prematurity increases risk.  Some forms may be merely a natural variation in the human spectrum.  The causes appear to be many.  Therefore, the effects are many as well.  Which means that what will help one autistic person isn’t necessarily going to help another.  And some on the spectrum don’t need our “help” at all.

It is not the fault of their parents for what they did or did not do in terms of doctors chosen or treatments attempted.  One child’s autism is not another’s.  No more than one person’s cancer is another’s.  So calling up the parents of an autistic child and telling them all about what “fixed” another person’s child or comparing autistic children to one another is an exercise in futility – and cruelty.  Would you call a lung cancer patient and berate her that she isn’t doing as well as your neighbor who had that spot of skin cancer removed from her nose?  I think not.  But people do it all the time to us.

Our children are individuals with individual differences.  And assuming that a severely autistic child will do just as well as a mildly autistic/Asperger’s child using the same interventions is a cruel misconception.  Why?  Because it automatically points a finger toward his parents, his school, his therapists.  And it suggests that the child may not have fulfilled his own potential.   This is not to say that parents should just give up and allow nature to take its course.  Yes, there are interventions that can greatly help children across the autism spectrum.  But I believe that we must consider the starting point of each child before setting our goals.  If goals are reached, then you set another one.  Sometimes amazing things happen that way and children seemingly without hope reach unpredicted milestones.  But the harsh reality is that some autistic children’s wiring is so severely impacted that they will never function independently.  And it isn’t pessimistic; it’s realistic. It is accepting the child for who he is while working to help him be the best him he can be. 

So, friends and family, acquaintances and strangers, I respectfully ask that you back off.  You might not know what you’re talking about.  You mean well, we know.  But we already have our hands full trying to maximize the potential for happiness – in whatever form it comes – in our children.  We don’t need amateur neurologists theorizing what we could be doing differently.  It’s insulting.  It’s frustrating.  It hurts.  If you want to help, how about calling and saying, “I know you’ve got your hands full.  Do you have a project around the house you think I could help with for an hour or two?  Do you need an hour or two to yourself?  Do you need me to run an errand?  Or take Susie to dance class, etc.?” 

That’s the kind help we really need.

68 thoughts on “Dear Well-Meaning Individual: So You Know An Autistic Child, Huh?

  1. kathywenning

    Hurtful!? Well, I don’t know the lady – but in my experience, when someone reaches out to help it comes from the heart. It may be misguided but it starts at the right place. Why lash out at someone who cares? I have also noticed in my 25 years of parenting a son with a disability that most conversations with other parents of children with disabilities are inspiring and uplifting. We can’t really give one another advice because we know that each child is an individual. But we can share our experiences and understanding of the challenges we all face. We get it. The value of having other parents in my life, as friends who get it, is priceless (as they say). Maybe this lady really did have something to offer you that was worthwhile?

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I wasn’t speaking to other parents of special needs children. I was speaking to people who know very little about it who are bombarding me with comparisons to other autistic children and suggestions for cures because they heard “so and so knows a kid with autism who went to college – why not do what their parents did?”. It isn’t that I don’t want to hear from and interact with people who are in my shoes. I do that every day right here. I frequently put out questions on my Facebook page asking other autism parents for advice. But I do resent hearing someone who doesn’t live it continually suggesting that my child will automatically benefit from the same thing that another child does — if only I was willing. In my book, that is hurtful. And incorrect. In my experience, most parents of special needs children know better to than to lump all children into the same category.

    2. WonderWoman

      I just wanted to add to Flappinessis’ comment. It also depends on the attitude in which “advice” is offered. We are aware when it’s judgmental and when it’s sincere. We are aware when we’re treated with disdain for not jumping at your suggestion. When we explain that this is what we are trying at the moment and the conclusions OUR family has decided to come to, please respect that we have researched, prayed, cried, pulled up big girl panties and are rockin’ every possibility for our child. We live it 24/7. It’s my opinion that that is what was hurtful. Just my thoughts…

    3. Chrissy Pat

      You are forgetting there is a segment of the population who offers advice whenever they see fit purely in a passive-aggressive, I-know-more-than-you-do manner. They stand on the outside looking in and think they know how to fix it, when in reality they only see what is on the surface.

  2. jenny moss benson (@Jenbenjenben)

    Thanks for this. It’s like the old “Einstein had autism!” comment. I think these quips are said in order to make us feel more hopeful (?), but I actually feel worse, because my son has a form of autism that’s more profound, and we’re just working now on ANY language. This kind of comment begs more comparison, which I think just drives a bigger wedge among autism parents.

    And it totally blows the minds of some when I say that my son may never speak, and THAT IS OK with us.

  3. Marilee Emerson

    Thank you for this post! I love your quote “one child’s autism is not another’s”, and would like permission to use it. For many years I’ve said, “if you’ve met one person with autism, you’ve met one person with autism”, but that needs updating! :) Generally I believe people are well-meaning and want to help, they just don’t know how. I’m glad you shared some suggestion of what real help looks like.

  4. jane ritchie

    Live in my shoes comes to mind whenever I get “helpful” advice about raising my son. As parents we do nothing but the best for our kids and when people who might be well meaning don’t think before they speak I feel I’m being criticized for not having a child who fits a mould.
    Thank you for sharing your experience.

  5. Marlene

    My son is now 38 yrs. old and I’ve had to take advice from many so-called ‘do-gooders’ meaning to offer up their articles or personal advice. This also includes a host of those so-called professionals who were new to their fields. into a position where it was their ‘job’ to provide their input…so often things they had never ever tried themselves under their own home turf, and often fresh from college with a new degree, no children or even little relationship experience. I learned long ago to offer up my polite thank yous…when pressed to do a certain trial I usually answered that we had previiously done such and such on such and such date in such and such year, but if they were suggesting a repeat, then I’d give reasons why it was not previously successful, often providing important input for their own knowledge bank. Yes, I continue to get advice…it’s just that people want so much to be helpful, but they don’t walk in our shoes with our unique set of circumstances and each of our children is unique to each context. I would also like to say here that in more recent years I have seen and heard Autism referred to as a “disease”…in all my studies never were we taught that autism is anything other than a “syndrome”…a cluster of symptoms which together define the diagnosis. It may be that those looking for a quick ‘cure’ have so labeled autism as a disease. In any case, take it from an older parent…each day will make you stronger. People from all walks of life will be sending you articles on autism; will be giving you advice on cures; on how to remedy behaviors, etc. etc. etc. I simply smile and say ‘thank you”, or I give a simple polite response like when my doctor recently suggested I take a vacation, just a few weeks or so to rest up from all my responsibilites. I said that sounded like a wonderful idea but the last time I attempted that it took about three weeks to try to line up care coverage for my son, arrange for alternate means of transportation for him and on and on, then after a day or so when the arrangements broke down, when he had a bad melt down and no one knew what to do, or the transportation didn’t show up, or some other arrangement boke down, the phone calls were in the cards for me to come home. My doc was a bit spell bound and speechless when she realized that iteven takes extra money to go on vacations when you are leaving behind a child with special needs and the difficulty to come up with that money because it costs extra to care for your loved one in the first place. , but even more than money is when one has to seek out care for the loved one with autism and because of the work involved in even arranging some away time, it often ends up more stressful than if I just stayed home and made sure life flows as well as it can.

  6. Holly F.

    I wonder how the other mom that your “friend” was trying to set you up with would have felt about the meeting. She probably would have immediately felt guilty that you were being served up to her as though she was a better mother than you because her adult son was on a different place on the spectrum. She probably would have known the idea of her telling you what works/worked in her family is fine as friendly talking but not as a “do this and your son will drive to work too.”

    People just seem to forget the word “spectrum.” My son has Down syndrome which is not considered a spectrum disorder but there are sure levels of functioning…which might as well be a spectrum. It is hard enough not comparing his level of functioning to typically developing kids, much less other kids with Ds that are functioning higher. It is exhausting. Do what is right for your child and your family. Guilt be darned.

  7. tiyanasmom

    So well said as usual. I find that moms of recovered or significantly improved children can be among the worst offenders in this department. Yes, they worked hard and did something right, but I’d also like them to acknowledge that they were also incredibly lucky and the stars were all lined up for them. I’m still hoping for a miracle, and if a miracle comes my way, I won’t ever look down or offer unsolicited advice to those who haven’t had a miracle in their lives yet.

    1. Alicia

      This is an honest question not meant to be antagonistic. I am the mom of a kiddo who has shown significant improvement. I want to share his success (his not mine as he is the one who worked hard). I also want to share hope. Where is the line? How can I not share something that I believe could possibly make a difference in your child’s life? I do understand the frustration written about in this post because I’ve been on the recieving end of it. I’ve had to tell an educator I was going my own way despite her repeated admonishment against my prefered course. I followed my own instincts. Doing that was the BEST decision I’ve ever made.

      Understanding both sides of this issue as I do I’ve always tried to offer information but not advice. I try to remain mindful of boundaries. I don’t want to make someone feel judged. At the same time, if I’m talking to a parent who isn’t familiar with or holds misunderstanding about ABA therapy I feel I SHOULD provide information so they have accurate info to base their decisions on. You and another poster are absolutely correct when you talk about the judgment that exists within our community. This is a complex community because it is filled with as much diversity in personality and needs in the parents as in the individual’s with an ASD. Some parents are fine discussing anything while others don’t want to hear anything. If we don’t share hope amongst ourselves we are doing as much of a disservice as when we impose judgment.

      So should I just leave it alone? Or is approaching it respectfully in an attempt to spread info alright?

      1. WonderWoman

        As with any advice, solicited or unsolicited, it’s the timing, delivery and the giver’s reaction to my difference of opinion that matters. If someone is sharing thoughts and it’s an actual discussion (both parties speak and are HEARD), it would be productive. If someone is just spouting words at me without being open to my thoughts, it doesn’t offer any ‘hope’. Productive conversations are what’s gonna move mountains. As with the timing? If I’ve had a particularly awful time today, your sunny disposition talking about how well your child did today is like salt in a wound. Not that we aren’t thrilled for you, my friend, and thrilled for your child, but it can be depressing and discouraging to me for the moment. A true friend is just that. Read moods the best you can. If you’re just an acquaintance, maybe it’s best not to share if not asked – ‘what do you think?’ That’s one I’m still learning. Sometimes we just need someone to HEAR us. We may not be asking for a solution. We may already know the solution, but still need someone to bounce frustration off of. Tricky business friendship is! Does that kind of answer your question?

      2. Alicia M.

        Wonderwoman, I’m replying here because there isn’t a reply option on your reply to me. So I hope you get a notification I’ve answered you. Thanks for your honest answer. The conversations I have are defenitely two way streets with lots of listening on my part. I do try to be carefull. Your pointing out how it can feel discouraging or “like salt in the wound” to hear how well Liam is doing is very usefull as I think I’ve probably done that without realizing it. I will be much more aware of how that may be percieved and what emotional response it may cause in the futur.

        Thanks again for replying

  8. Lisa

    Well said! And totally agree with “WonderWoman” above…we can tell sincere advice from judgmental, and we just need to go at our own pace.

  9. Michelle

    Autism Acceptance is also a spectrum. As parents, we all choose what we can best handle. If my daughter never “recovers” from her severe autism, so be it. I can live with that. It’s other people that seem to have a problem with it. An autistic man once told me and a group of fellow parents, “whatever you are doing right now for your child is the right thing to do right now.” Don’t sweat the “what ifs”.

  10. Jenni

    Thank you. Thank you. I have been trying to express this for years. Now ai will just print this out and hand it to those “ignorant” folks I run across.

  11. Maureen

    I have an autistic son, who is 13. I do not really take much offense, just minor annoyance at times, to people who call with advice. They are usually more ignorant than , say, school therapists and special ed teachers…..who i find much more difficult to deal with….because they really should “know better”. It gets worse as a child ages.

  12. Katie Hodskins

    Hi! I just wanted to let you know that I really enjoy reading your blog. This post really made me think about my tact when I am working with parents and when to determine between parents asking for advice or just venting/needing an ear.

    After graduate school, I really want to grow in helping parents as well as providing behavior services, but I have worked with “well meaning professionals” who did not have a clue as how to help a family outside behavior/speech/OT services, and I want to make sure that I do not follow the same path.

    If you have a moment, I would like to hear your and other parent opinions regarding the quality of resources that are available to your family and your son’s autism.
    Thank you for all the writing you do.

    Katie Hodskins
    Clinical Psychology/Behavior Analysis student
    kloring001@gmail.com

  13. MizKp

    I wish I could go on national tv and read your post out loud. I wish I could share it with every one walking the face of this earth. This is so true. I have had so many tell me things from medical doctors while at my annual physical to well meaning family. It hurts dammit!!! We are doing our best. Thanks so much for this post. I will never give up on my child but I know and accept that it is what it is. I am learning to deal. Thank. Going to share this now.

  14. Jo Ashline

    This post strikes at the heart of several issues pertaining to ASD. While I realize that your piece was about someone who doesn’t have firsthand experience with autism, I believe your sentiments ring true for those of us who DO have autism in our lives on a regular basis – such as parents of children and adult children on the spectrum, as well as self-advocates living with an ASD diagnosis.

    At the end of the day, autism is a single word used to describe a multitude of symptoms and while some may consider their diagnosis a “gift,” others are all but incapacitated by it. As a parent I have witnessed the same kind of “advice” you describe here within our very own autism communities: moms and dads who bully others into trying their methods and claiming it’s the only way to unlock your child, self-advocates who admonish parents devoted to helping improve the quality of their autistic child’s life because they seek out treatments and interventions…..the list goes on an on.

    It’s not just those on the outside looking in who fail to realize that every person with an ASD is unique – those of us in the trenches are guilty of doing the same thing as well.
    We argue over semantics, the potential causes of autism, the various “treatments” for it, and whether or not seeking autism treatment for a loved one makes us a bigoted “curebie ” or just a really good parent who loves their kid.

    In fact, I guarantee you that someone out there will find great offense in your use of cancer and autism in the same blog post – even though what you wrote was a great way to make your point, a point you made based on YOUR experience with autism.

    We waste so much time on this other crap – trying to convince one another that autism is either a blessing or a curse, that we are systematically failing our community because what we truly need is to band together to create a world that sees individuals with autism as valuable members of society, as equals, regardless of whether or not they are college graduates or still wear pull ups at the age of 30.

    My son has autism. Your son has autism. I bet, if we went out for coffee together, we would find that our experiences share some common denominators, but that for the most part, our day to day lives are vastly different and our short term and long term goals for our boys are very different as well.

    But I also bet that if we took the time to talk about the changes we want to see in the world as far as attitudes towards special needs individuals are – including those with an ASD – we would probably agree wholeheartedly that there is much work to be done if our children are to live safely among their peers.

    Your post was wonderful. It really resonated with me as I continue to try and make sense of why we cannot find common ground in this wide, diverse, beautiful, imperfect community. It’s heartbreaking to me because at the end of the day, I’m not looking for more advice. I’m just looking for understanding. And if I can’t find them among my own, -among the people for whom autism is not just another word – how can I even begin to expect that from those who are on the outside looking in?

  15. Jack Ori

    Thank you so much for this post. I think what it all comes down to is that people in general tend to think that being a severely autistic person who cannot live independently, and especially being a non-verbal autistic person, is a terrible tragedy that should be avoided at all costs.

    Now, as a person with Aspergers I do believe that if interventions do work they should be used. I also believe that parents know best what is best for their child and that the only people who ought to be talking to parents about their treatment choices are doctors who specialise in autism/Aspergers.

    I think that the insensitive remarks your friends make are based on the assumption that you should have a “normal” son, whatever that means. I admire you for accepting your son as he is and dealing with the situation rather than trying to “fix” him in ways that don’t gel with how his brain is wired.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thank you for taking the time to reply. I am so glad that you understand what I am trying to say. I was somewhat afraid to make the comparison that I did out of fear that people would think I was implying some dreadful outcome to autism. Yes, there are very sad stories out there of individuals who do suffer. But then there are also stories of people who aren’t suffering at all – except for the realization that they are disappointing some other person’s view of who they should be. My son is a joy of a soul who makes us laugh every day. He’s loved for who he is right now. And that is ALL that matters really. Do I want the world available to him? Of course. But I want him to know he is deserving of everything just as he is even more. Thanks so much, Jack.

  16. Lisa | Renovating Italy

    I just tried to have this converstion with my step dad last night. I’d send him this but he would just take it the wrong way so I smile and nod when he tells me about the latest “break through” that would fix Luca.

    thanks for putting it all so clearly and yes you made me cry!!
    sending love
    x

  17. Shannon

    Thank you…well said. I would love to help with your errands if I could find someone to help with mine! Stay strong, you are an excellent momma.

  18. AdvocateForLife

    Dear Hyperreactional-Parent-of-an-Autistic-Child,

    Was it really necessary to write a 10+ paragraph lambasting an individual who possibly had good intentions, but poor execution on those intentions?

    This posting represents all that is WRONG with so many involved in Autistic Advocacy: aggressive, attacking, complaining, overreacting, rushing to judgement, gossip, lack of critical thinking skills, immaturity, self-centeredness, emotionally charged, lacking reason and logic, lack of compassion. Lacking an understanding that not all humans are perfect – and not all humans think and act the same.

    It would be much more beneficial to to the autistic community if their advocates showed grace, patience, understanding, restraint, an interest to educate, communicate positively, develop and maintain positive relationships and partership.

    Learn to get along with others – even if you don’t see completely eye to eye. Keep calm and carry on.

    “You’ll catch more flies with honey than vinegar”

    1. Chrissy Pat

      Aggressive? Rushing to judgement? Self-centered? Methinks you don’t read much of Flappiness. If anything she is eloquent, patient and kind. Poor intentions or no, some folks do NOT have our best interests at heart. They truly are “know-it-all” types. And sometimes they just don’t know when to shut up. People with boundary issues. Passive aggressive types. Of course, your angry, over-the-top reaction is sort of pot-kettle, isn’t it?

      1. AdvocateForLife

        Chrissy,

        The author has no facts, only assumptions based on her apparent mind-reading skills:

        “It was obvious to me that she thinks…”
        “She thought that…”
        “I’ve seen it in her eyes…”

        Merely because the friend offered to introduce her to another Autism Mom?

        Another knee-jerk reaction, sensationalized on the interwebs for the purpose of sympathy and attention. Over-dramatizing and ostrasizing are not productive in the support of this cause.

        1. Profile photo of FlappinessIsFlappinessIs Post author

          Dear Advocate,

          I think that perhaps you are not taking something into consideration. This is a personal blog. Yes, it is on the internet – and public – and therefore open to commentary by you. That’s why I shared your comments. It’s fair game. But you may not have considered that most of the people who read this post are regular readers who know details about me, my family, and my opinions on various matters. You are a newcomer, and I suspect that you have not read any of my other posts. If you had, I think you would quickly see that your presumption that I go around attacking innocent people isn’t correct.

          The person I didn’t name isn’t a casual acquaintance. I would never and have never once jumped down the throat of any well-meaning person. This post is merely my thoughts and emotions — the ones I did not express — because I happen to be one of those sorts of people who hates hurting anyone’s feelings. My friends and family have fussed at me for years to stand up for myself when warranted. My first instinct, however, is usually to smooth things over and assume good intentions.

          This individual, however, does not have good intentions. She’s my mother-in-law. A woman who has repeatedly suggested that my DNA, my allowing my child to watch TV, my not entering my son in preschool earlier, etc. have all been the cause of his autism. She frequently compares my child to his first cousin (who is just 6 weeks older) and makes a big show of lamenting to everyone how my son doesn’t measure up. She talks behind my back and tells others we obviously aren’t doing enough or he would be talking and potty trained. All because she knows a couple of other autistic kids who are “doing well”. So, when I said I knew what she was thinking? Well, I knew from experience. I knew from her previous statement, abrupt manner, and telling silence. I knew. Perhaps I should have outright named her, but I didn’t think that was necessary at the time. I figured my readers – who know me and my life through my writing – would infer who “someone” was.

          I was not upset at the thought of being introducted to another autism mom. I was upset at her implication that, because this woman’s child was doing well, that somehow this woman was doing all the right things and that my son would as well — if only I were willing to meet her. Your assumption that I don’t want to meet other autism moms is off-base. I think the fact that I have an autism parenting blog speaks to the contrary. I love meeting other autism moms. I have 1300 readers to interact with and over 3000 on Facebook. If you’ll take a moment to go and look at my Facebook page, you’ll see that I FREQUENTLY throw out a question involving my child and ask for their opinions. It is what I consider one of the greatest blessings of this blogging experience that I can ask a question and get a couple of hundred suggestions from other parents with experience in just minutes. I don’t take their advice lightly, and I ask for it often. This is, perhaps, why some of my readers are responding to you with such frustration. Quite simply, they have the advantage of knowing me a bit better than you. They read me regularly, while you are merely responding to a single post.

          I do know of the hostility of which you speak that is often found in the autism parenting community. I have written about it at length. I don’t like it either. I’m never upset when someone hands me an article and asks what I think. Or if they tell me something is on 60 minutes about autism. I do get upset when people say things like, “Well, when you get serious about treatment and decide you’d rather cure him, go see my friend’s doctor so-and-so.” You wouldn’t believe how often people do that to autism parents. Snake oil is abundant in this community. And I confess I get tired of it being pitched to me. If it is well-intentioned, I don’t mind. I always just nod and say thank you. But, when it is implied that my son will respond to something in the exact same way as another child – by someone who knows nothing about autism, it irritates me. I have never been rude to any of them. Instead, I bury my frustrations, smile, and then come to my refuge – this blog – to write out how I really feel to a sympathetic audience of other parents who have experienced the same frustrations. Doing that allows me to NOT blow up at “someone”. It allows me to suck it up and be kind when I don’t feel like it. To get it out of my head so that I can go on with my day.

          Apparently, I made a mistake. Not in thinking that I could read minds, as you implied. But in thinking that the average reader who doesn’t follow me could read mine. You did not have the advantage of knowing the background of the person I was referring to. And I didn’t – in this post – paint a clear enough picture for you to do so. I was writing to my regular readership. I guess, like soap opera writers, I need to take into consideration that some folks come across me later on and be sure to share some of my back story when needed.

          However, I will not own that you are correct in any of the assumptions that made about me. I find it ironic that you accused me of being quick to judge. Have you looked again at the laundry list of insults you hurled upon me based upon reading one single post? When I studied literature in college, we were taught to compare several of an author’s works before attempting to analyze the character of their writer’s voice. You didn’t take issue with the points I was making. You quickly rushed to judgment about my character, based upon one essay. If that’s not a rush to judgment, I don’t know what is.

          Here’s what I’m thinking. I could be wrong, so feel free to correct me. I suspect that you might not be an autism parent. I suspect that you may be on the spectrum yourself or even the loved one of someone on the spectrum. I think that you have seen the anger and hatred that you are correct runs rampant in this community. I think you see merely curious people being trounced by parents overly sensitive to previous cruelty by others. I think you probably also see the anger – some of it righteous, some of it not – that is also in the self-advocate community. And you are probably also just as tired of it as me. And I think you came across a post I wrote on a bad day and assumed I am one of those vitriolic folks who do nothing but attack others. I’m not. But, unless you explore some of my other writings, you won’t know differently. I invite you to do so. And I invite you to come back. Because I don’t think our views are actually that far apart. I’d like for you to read a couple of other posts by me before you make a permanent decision about me and my writing. Here are two:

          http://flappinessis.com/2012/02/01/silencing-ourselves-a-plea-for-civility-in-the-asd-community/

          http://flappinessis.com/2011/12/07/reply-to-a-disgruntled-reader/

          Whether you choose to do so or not, thank you for taking the time to read and consider my response.
          Best wishes to you and yours.
          Sincerely,
          Leigh

    2. Lara

      I know quite a few women who wouldn’t hesitate to put you back in your place for suggesting they meet someone who might be able to offer some advise on how to handle their non-autistic child’s behaviors. Yet us parents of children with an ASD continue to smile and be polite when they do that to us, and you can only do that so many times. Nobody likes to be judged, especially when it comes to their children!

    3. WonderWoman

      You ever talk to an individual that doesn’t hear a word you’re saying? Ever had that same person continue to tell you what you’re doing wrong in your life and how they have all the answers to life’s questions because they read an article somewhere? I have. This was way before I ever had dealings personally with the Autism community. If I have a pimple, oh, you should do this. If I have a gray hair, oh, you should do this. If I limp, burp, pass gas, feel sleepy, have insomnia? Here’s the answer. There is no explanation under the sun that will suffice. Even if it’s a scientifically proven fact, said person will not hear it. Perhaps after several attempts to explain oneself and several eye-rolls and tsk-tsks back at you, it’s more than you can take.

      This is a blog. A place to talk things out. A place to vent one’s frustrations….today. Would you rather have had her blow up at this woman or vent on here?

      Every person I have ever met will an ailment, whether they own it or love someone who owns it, gets several unsolicited “cures” to their problem on a daily basis. It gets unbearable! Don’t you think if there was a pill I could take to “cure” me, I wouldn’t sell my house to get it? We try everything at first. We read everything at first. It’s when we calm down, accept, move forward in a more rational way of tackling it that we find peace. We don’t give up! We just make peace with it. Please don’t deny someone their peace. It’s part of the grieving process. Denial, anger, acceptance, peace.

    4. lybliss

      wow, what a mean and unfair appraisal of a mother who has shown such grace, patience and sense of humour throughout her journey. Her comments are very valid and something which many of us have felt and blogged about. You have attacked unfairly, judged harshly and sadly brought shame to the notion of Advocacy For Life. Perhaps you need to rethink your handle name. You certainly haven’t earnt it today.

    5. kari

      Wow, “Advocateforlife”! Judgmental much? You appear to be the one in attack mode! Name calling? Really? That’s SO unhelpful. Geez Louise! You are the kind of person who needs to BACK OFF! And who the heck wants to catch flies anyhow – well, unless they’re fireflies…

      1. Coret OtheCountry

        I agree, Kari, with your reply to Advocateforlife. I can just imagine adv4life running around being the busybody of the neighborhood, determined to “fix” everyone, getting shot down at every turn, and being VERY frustrated for it. Poor thing. The world is full of folks like that–Could fix the world, if we would just all obey! hehe. They usually mean well.

        OK. Saying that, I will say this: I see BOTH sides of it. I am an ASD Mom of a 33 yr old little man, who still lives with me, since he isn’t able to make safe decisions on his own. (We tried that for 9 years, and it ran me ragged. It WAS a bit more peaceful, at least at night, but the worry was extreme, since he lived 15 miles away.)

        My boy was born very angry, and has been angry every day of his life since. Its very hard to live with the constant verbal abuse from him, the confused chaotic spurts of accusations, his using hurtful, vulgar words he’s heard on TV, that he doesn’t even know the meaning of, against us, and r/t his paranoid-delusional behavior, the occasional physical attacks, the auditory hallucinations that set him off into a fighting frenzy, etc, etc. AND, for me, it was even hard to live with the fact that when he was at school, he was a ‘little angel’, and his teacher basically called me a liar, -until I brought him a video of my boy literally windmilling us all as he ran, screaming obscenities, through the house. Shocked Teacher! ha! I have tried everything I know how, to help him find peace, over the years. Not even ONE person is qualified to give me advice on this tormented family. Yet, I listen respectfully to others’ advice, and answer patiently, and even smile when they give me that “Oh, this would work PERFECTLY if you would just listen and obey!” look. I tolerate it, because of “…there, but for the Grace of GOD, go I.” GOD could have built me to be a know-it-all, or a busybody, and that would have simply been another cross to bear, and another self-problem to work on. My blessed, beautiful Mom STILL is sure that it is only because son is ‘spoiled’ that he acts like this. It just doesn’t compute in her mind that son really is in a frenzy because of imagined problems that are torturing him, that he blames on our family. These are the only people he really knows, so he has to blame someone! When Mom says he just needs a good spanking, I just shake my head. I say “Tried that, Mom, it just infuriates him even more.” and smile.

        I have spent most of my adult life PROTECTING my family from my son, and my son from my family. Some of you ASD Moms will totally get that. It sends family into a confused, frightened frenzy when my boy grabs a big stick and begins slamming it down on a surface -maybe a table, with glassware on it, while screaming obscenities at them, -when they did NOTHING to warrant that behavior. They are not like us. They don’t live it all day every day. I know that my son has been truly antagonized by the confusion of mysteries inside his mind. So, I put up with their well-meaning advice. They are trying to help, tho they haven’t a CLUE. I don’t WANT them to have a clue. I don’t WANT my family or friends living this life I live. And, I have been there in the advice-giving arena, myself. In fact, I am currently wanting to shout out to the special-needs world the virtues of low-dose Risperdal, a med that is often given for anger and anxiety disorders. We tried that med years ago, but the dose was way too high. I restarted my son on it about 2 weeks ago, at 1/4 mg 3X day, and then when that didn’t help, at 1/2 mg am, + pm, with 1/4 mg early afternoon, -fine-tuned the dose with his doc, and I have a COMPLETELY different son! A miracle! (unless I am late for a dose, then he is back to furious) To me, it is a miracle, as I was finally beginning to lose it with my boy when he would relentlessly attack me and the family verbally, day after day, often from the moment he woke to about 3 or 4 am the next morn. Try that on for size! I guess I had reached the limit of my tolerance, after all these years. My family and friends were telling me to put him into a home. I told them it would destroy him, as they would all hate him in about a month, and told them the reason I am here on Earth is to raise this special child of mine. Not very many people could have done it. (Oh, and son is no longer an angel in public) The advice-givers were genuinely concerned for MY sanity, however. I am the ONLY one who is genuinely concerned for my son’s happiness. I KNOW he sometimes feels happy- I can tell by the motor-sounds he makes between attacks on me. So, Risperdal has saved my sanity at the last moment, and brought my son peace. That is NOT to say I think Risperdal is for even most ASD kids, but there are a FEW parents out there that have kids like me- constantly battling their personal little ‘demons’, …in a fight for their lives, they think, sinking the entire family with the ship they are fighting on. I KNOW full-well most don’t need to hear about it. Yet, I am excited, and want to help the few that DO need it. -But I don’t know who they are! So, here I am telling you, and you, and you! Just like the well-meaning folks in your life giving “helpful advice”.

        They hear of an ASD family’s success story, and they care SO much about you and your family, and feel so helpless to assist you, so they share their excitement with you. I want to tell everyone that might benefit from the low-dose Risperdal my great news, hoping that if I tell YOU, even if it wont help you, that you might pass on the tip to someone it could help. Same thing. Its just a sign they care,

        -and, finally, their unsolicited advice can easily be handled by replying to them, “Thank you for caring! It means a lot to me. I’ll certainly consider it, and even if that tip wont work in our particular case, I will certainly pass it on to anyone I know in the ASD world that it might help.” Handled! They feel like they have helped someone, and you were loving and kind and not hurt from their crazy-love-attack. Roll with it. YOU know you are an excellent parent, that’s really all that matters. Sorry this was a book.

    6. Lynne Pardi

      Are you kidding?? This Flappiness blog is one of the very best, if not THE BEST one that I have ever read about the experiences of raising an autistic child. The author is absolutely NONE of the insulting adjectives you used to describe her. Her writing is always intelligent, thoughtful, insightful, sensitive to others, very rational, balanced, and a joy to read!! Her commentary never fails to resonate powerfully among us parents of autistic children– just read some of her many posts and the responses! She truly does “get it” because she is LIVING the experience. “Hyperreactional”?? Not at all!! YOU seem awfully “hypercritical” and judgemental to this reader!

  19. dogfordavid

    Thank-you so much for this post. I couldn’t have found a way to say it better than this. Especially that last part…

    “We don’t need amateur neurologists theorizing what we could be doing differently. It’s insulting. It’s frustrating. It hurts. If you want to help, how about calling and saying, “I know you’ve got your hands full. Do you have a project around the house you think I could help with for an hour or two? Do you need an hour or two to yourself? Do you need me to run an errand? Or take Susie to dance class, etc.?”

    That’s the kind help we really need.”

    Thank-you so much for another great post :)

  20. Stella

    Thank you. I have been following your posts for some time now, and so often what you have to say shines a light ( and lifts a burden) on something that is happening in my world.

  21. lybliss

    I absolutely agree with what you are saying here, It isn’t the offer of information, it is the implication that you haven’t turned over every freakin rock and log searching for the best way for YOUR FAMILY to move forward. I blogged about it a few months ago, that well meaning but pointed inference that your assessment of your own child is incorrect
    Hoping it’s not too rude .. but here’s my post and how I tried to describe it – http://simplelovingthoughts.blogspot.com.au/2012/05/describing-dog-asd-post.html

  22. Brittany

    My friend Margie (who commented above) referred me to this post, and first let me be clear that I do not have any children on the spectrum, so therefore I know that I CANNOT know how it is to be a mom of such a child, nor will I ever be as knowledgable or as sensitive to autism as you are. I have known kids on the spectrum, I have taught kids who are on the spectrum, and have talked and read about it, so I am at least basically familiar, but again, I in no way claim to be an expert or one to give advice.

    That being said, as someone who is an outsider to that world, I DO know how it is to be concerned for these kids and their parents (Margie in particular). I probably have said things to Margie that irritate her, and I appreciate her patience with me, and not getting too defensive. She’s probably not getting too upset because she knows that I AM concerned. That I’m not trying to offend her, scold her, tell her what to do or what she’s doing wrong, even though at times it may feel like that. But, moms of autistic children, please give us the benefit of the doubt! You know that we love and respect you, and that we honestly are just trying to help! It’s perfectly fine to stop us and calmly and rationally explain why we are wrong or why that suggestion doesn’t work for your family, but please don’t get angry, frustrated, or hurt. That is the last thing we want. Of course, that’s easier said than done, so if we do make you angry, frustrated, or hurt, again, please, calmly and rationally let us know so we can apologize.

    Flappiness (<— cute, BTW), you said, "Eventually, both of us tired of the awkward conversation and hung up. I walked away unsettled. Defensive. Wanting to cry. Knowing exactly what she was thinking. She’s given up on her child. She’s not going to try to keep helping him. She’s a terrible mother, and he’ll never talk or have a normal life because of her." How can you know that? How can you know what she was thinking? Maybe she was silent and then it was awkward because she knew she had upset you and didn't expect or intend to. Maybe she wanted to cry too.

    It comes down to this: No, we don't understand. We may never understand. We don't know how it feels. We don't know how to help, or even if we can help. But many, maybe even most of us are willing. We care about you and your children. We may say stupid, even hurtful things, but please forgive us quickly because our intentions are usually good. Please remember that. Thanks.

    1. Brittany

      After reading through this article and all the comments again I wanted to clarify one thing:
      I am not suggesting that you (parents of ASD kids) should accept and/or follow advice from us (pretty much everyone else). I believe that unless I am experiencing the exact same problems (which is rare), I am in no place to give advice. And I completely understand not wanting to be on the receiving end of that unsolicited, unwanted, and most likely inaccurate advice, especially when it comes to my children.
      I AM asking, pleading, really, that those of you who have autistic kids, and get advice or questions from someone unqualified (which, let’s be honest, is nearly everyone) please try not to immediately get super defensive. I’m not saying you don’t have the right to be defensive and annoyed. You probably get crap like this all the time. You can tell us that. Calmly. Please don’t yell, don’t get red-faced, don’t cry, don’t lecture, and don’t decide that you want nothing to do with us because we’re “ignorant”. Rather, educate us- let us know how it really is. Just because we say dumb stuff doesn’t mean we’re cruel.

      1. 1funmum

        Hi I saw your post I hope you read mine. Not lecturing but it may come off that way. Sorry. Thought you were right support people do need to be given education on how to be supportive. In a indoor voice. The problem is will the people who support us receive the education that is given to them on how to be a support person in a indoor voice. You see, it’s ok to have an opinion but there is away to share it with an ASD parent. You really seem to try to put your friends feeling into consideration. That’s very important. I wanted to tell you though that how you respond to someone being upset with how you support them is also apart of being a good support person. If you take the high road and just say sorry they should not treat you badly. If they still do then it just maybe not a good time for them. If a person is hurting someone in a way where it’s bullying then that’s not support. That’s just bullying. Support shouldn’t bring tears or depression. If any support person is supporting an ASD mom this way then she may have the right to leave this person alone. Even if it hurts that person. Especially if the support person has refused to acknowledge they were wrong hurt or bullied the person. It’s how you take the correction that will make the difference. Not just how they gave the correction. If your still fighting to be right then your just fighting and not being a support person. I think your a great person for trying your best to help educate ASD moms about how you feel as the person being yelled at or discarded. It will help ASD moms to see that some people do try to do their best. Even if they get it wrong. That they want to be talked to not yelled at. But I got to say it. If you are stressed and often tring to hide it, you may not correct a friend nicely you may lash out in the same ugliness they have shown you. A person may insult you with a smile but it still an insult. Last thing is don’t be the kind of support person that lashes out back. It’s ok not to be happy with them but you try first to use your indoor voice okay. It helps a lot. Most importantly as a support person you should not end up as the ASD mommy chew toy. Just cause it’s hard on us doesn’t mean we get to lash out at you. So calmly stating your sorry and how they are making you feel is a good thing. ASD mommies don’t have the right to become bullies back. We just have the right to walk away and find better support.

      2. Brittany

        Yes, 1funmum, I did read your post and your reply. Thank you. I think both parties just need to be understanding. Meaning, we won’t always react to each other in the best way. We will lash out sometimes. We will react poorly. I guess I need to be more careful myself when I take offense to people taking offense! Can’t we all just get along? It just seems like I hear a lot of ASD moms venting about non-ASD moms and how insensitive, rude, or ignorant they are. Maybe we (support people) just need to shut up sometimes, but I appreciate that you and others hear that we do have feelings too, and can get hurt to your responses.

  23. Mama D

    I don’t think any parent of any child on the spectrum needs anything else to feel guilty about! We do so much praying and reading and second-guessing and trying to figure out what is right for our kids, and we should be able to tell those (well-meaning or not) who add to our stress by implying that we aren’t good parents because we don’t take up a course of action they suggest to take a flying leap!

  24. 1funmum

    I don’t usually comment on someone’s comment but I think you were harsh. Just cause we are on line doesn’t mean we should forget that this is another person. A person who has a blog, who is sharing their feelings. *Read disclaimer* there are a lot of people who do say some things that is not always helpful to the Autism community but it’s a bit harsh to say this post was one of them. Could it be that you have hurt someone once with your words or did she hit a spot that hurts you personally. Just wondering why all the anger. She is after all using her blog to talk about a topic she feels has affected her life. She wasn’t gossiping per say. It is something that hit her hard. If she outs the person publicly then she would be doing the friend and friendship an injustice. But this is her friendship let that stand between them. It’s like a school yard fight do we all have to jump in. Well I guess I did now too but at least it was to hope you will see that you made more hurtful comments then she did. Her comments were well thought out and with a lot less venom.

    1. 1funmum

      Whoops I was commenting on advocate for life’s comment. I just wanted to say flappiness hope you and your friend make it through this rough patch. I had a hard time with many the well meaning but not so well meaning friend. To brittney even if it’s not truly a comment to all us ASD moms. Thank you for at least tring to acknowledge that you may have said something to hurt someone even if it’s unintentional. Often people try harder to justify why they should get to make comments they often don’t ever say sorry. It takes a good friend to even say some of what you just said. You sound like you would think about your friends feelings. It’s hard to be a support person. We ASD moms often take seminars and read books to be good at what we do. We eat and breath this stuff I sware. But there isn’t a seminar or book on how to be a good support person. So hats off to all of the people who give it a real good try. To all who read this blog post. Please walk away with one thing. She is hurt so this would be how not to be a good support person. When you support someone they don’t get hurt. The best way to support an ASD family is to ask how can you be the best support to them. Be trustworthy, be honest, but never take the parents decisions away from them. Never say things like if I was you. We are often stressed so lessen it. Never add to it ok. When you hurt the ASD parent you are hurting the child ten fold. Cause the parent is that child’s everything. It’s main support system. Thank you for loving an ASD parent and kid.

  25. my alternate reality

    Generally I do not comment on these things but this person pissed me off beyond seeing straight

    —-Dear Hyperreactional-Parent-of-an-Autistic-Child,——————————————

    Who the crap do you think you are the queen of passive aggressiveness??

    ——–Was it really necessary to write a 10+ paragraph lambasting an individual who possibly had good intentions, but poor execution on those intentions?——————–

    Lambasting? I hardly think so! everyone with advice hides behind “good intentions” after 13+ years of everyone’s “good intentions” screw good intentions the road to hell is paved with them so give that some thought while your up on your freaking pedestal!

    —–This posting represents all that is WRONG with so many involved in Autistic Advocacy: aggressive, attacking, complaining, overreacting, rushing to judgement, gossip, lack of critical thinking skills, immaturity, self-centeredness, emotionally charged, lacking reason and logic, lack of compassion. Lacking an understanding that not all humans are perfect – and not all humans think and act the same.———————-

    You walk a week a month a year a lifetime in our shoes you deal with being abandoned by your family friends co workers church and the world in general you spend weeks months and years looking for a diagnosis treatment therapist MONEY to pay for everything give up everything. What is wrong is we are fighting in the dark with our hands tied behind our backs. We aren’t looking for perfect we are looking for the best we can do for our children. We are in the trenches FIGHTING for our children in a hell that someone like you cannot even imagine. It is something you should get on your self righteous knees tonight and thank God your not in our shoes

    —–It would be much more beneficial to to the autistic community if their advocates showed grace, patience, understanding, restraint, an interest to educate, communicate positively, develop and maintain positive relationships and partership.—————-

    I started out as many of us do trying to be that perfect example the therapist the advocate the mom the wife the public educator the teacher the teachers aid the travel coordinator the financial guru the insurance advocate not including all the daily stuff like housework and cooking that has to get done and in case you haven’t figured it out this isn’t the flipping junior league honey this is real life and some days it sucks everyday its hard and your judgmental hateful post do NOTHING and I do mean NOTHING to help

    —–Learn to get along with others – even if you don’t see completely eye to eye. Keep calm and carry on.————————————————————————–

    This one line tells volumes about how much you know about living with an autistic child. Some of us fight different battles some every once in a while some fight every minute of the day but we are ALL fighting the same WAR. We all love our kids and we all have battle scars because we love our kids. There is little funding for research no one knows where this comes from or why and we all have our own take on things. We try different things wanting desperately for them to work knowing most of them wont. And no we dont always agree and some never will but people like you are lower than whale poop and you dont have a CLUE what we go through and until things change not just for my kids but for all our kids I will speak my mind especially to BULLIES like YOU!

    And I do love your flappiness blog!

  26. Lynne Pardi

    Well, Leigh, you have done it again!! You have “hit the nail on the head” and beautifully, perfectly articulated what I have so often thought and felt! My Dad and stepmother used to torment me with calls about another couple at their church who had an autistic child…..”And he is quiet and well-behaved, and he loves listening to the choir sing! They bring him every week. The parents are so calm and pleasant, too!” My Jay wouldn’t have lasted 3 minutes in a church service. He once stripped naked in the ball pit inside a McDonald’s play area! I had to crawl in there among the toddlers and hastily dress him and get him out of there. My son was hyperactive and had (still has) serious sensory and behavioral issues. Our family outings tended to be tense and few & far between. We chose very kid-friendly venues and sat close to exits. Most of the time, “calm and pleasant” would not have described us.

    The underlying “message” in these phone calls was that we must be going at this autism thing all wrong! Other parents were doing so much better with their autistic children! It made me feel like a colossal failure who was failing my child. It didn’t help.

    Well-meaning friends and family frequently called to tell me that they had heard that autism had been finally “cured” with this new therapy or miracle or whatever!! All I had to do was to bring my Jay to this lab where sounds would be played through a headset into his ears; or, I just needed to get hold of this hormone from pigs; or, put him on a certain strict diet; and the list goes on!! We tried the things we could try. None of the so-called “miracle cures” worked on our son. As you pointed out so clearly, each autistic child and each case of autism is different, and there are very wide differences!! The cancer analogy was perfect! But, we knew that people thought that WE must be doing something wrong because these measures had worked for other children. We often felt that way ourselves.

    We were bombarded by magazine and newspaper articles about other autistic kids. This boy loved music, that one computers. Such interests could be, and have been, used as tools by parents and teachers to “reach” these kids and help them to learn and communicate. Jay had no particular interest or talent– at least none that we have been able to discover. Family members would send us these articles with attached notes, like, “Maybe you should give hin piano lessons! Or, play different kinds of music around him.” Also, “Let’s get him on that computer!!” I can vividly recall wanting to scream. Occasionally, I did scream.

    What you said is so true!! We are doing the best we can. We are reading and talking to many doctors and experts. We know more about autism than you do– more than we ever wanted to know about anything!! If you really want to help us, just lend a sympathetic ear, offer to babysit, cook us a meal, or give us a ride somewhere. Just “be there” for us. Again, thank you for saying it so eloquently. You speak for so many!

  27. Victoria Helen Maroney

    I agree absolutely with you on this one. I even had one “friend” tell me in front of a room full of people at another friend’s ***40th Birthday party*** that I’m a terrible mother, I’ve given up on my daughter and that she should be taken off me (great timing to add to the joyous and celebratory atmosphere, eh?) . I could have sued her for that but I chose to keep a dignified silence. Later, I chose to tell her to “have a nice life” over the phone and… good riddance to a poisonous, unpleasant woman as a result!!! These so-called “experts” appear to know more than pediatricians, social workers, special needs teachers, health visitors….. (add as many professionals to the list as you see fit) AS WELL AS the parents who care for and adore the child. Apart from sloughing off dead-weight so-called “friends” who would use me for an emotional punch bag via the Achilles Heel of my daughter’s Autism, I would say the same thing as you have here… If you REALLY want to help, stop with the unsolicited advice and fix the leak in our shower please!!

  28. 1funmum

    Well I read the post down below after some well deserved sleep. Some make me cheer some bring me down. But I want to say my last bit.
    I think this blog post is coming from a place of pain. It is well written. Very well thought out. But the truth of pain often hurts. Not just the person who is injured but also who injured the person. I don’t blog. Yep! I just don’t but I love reading them. You might see my posts back here and there. So if I could have written this this is what I would say
    HOW TO BE A SUPPORT PERSON 101
    your friend/family member has just been handed a Autism diagnoses. What can you say and do. For starters Don’t give your condolences. No one died. ” I’m so sorry about your loss” is not okay. In fact just listen. This is where it gets tricky. You have to shove all your own personal needs aside. Not easy if you are really close to parents. Do what ever it takes inside you to be your best you at this moment. Think watch feel ask. Think before you do an action ( is this to help me through this or is this to help them) watch what they are doing. ( this doesn’t mean you chase them around or invade their personal space. Not a tv show just a family) but watch how they are handling it. Take you ques from them. With the diagnoses comes stages of grief. ( again do not go to sorry for your loss). Respect the parents right to be in what ever stage they are in. Putting all your needs to be in the same stages aside. Remember the most biggest part to this is IT’S NOT YOUR KID!
    Big words I know but that’s the biggest part. Not your kid is a tough one to swallow if your a control freak. Oh yeah don’t be a control freak. Make a mental note every time you see the parents. Say to your self ” they got this. This is their kid. I didn’t make it. I won’t be raising it. I’m just an innocent bystander. I’m not a doctor nor is this my patient.”
    Now feel! Feel free to grieve if you must but don’t try to out do the parents if they are grieving. Remember even if you are close this is not your life. It could even be your grandchild. Still not your kid though. Meet all your needs first do not put your needs on the parents. They do not need to deal with your feelings. A good suggestion for families and friends who want to be great support is to go to all classes and seminars together. Ask if you can attend too but stay off in the distance. Again I must stress this is not your kid. Help take notes, listen to what’s being learned and read what they are reading. If you read what they read you will know what they know. Where they come from. ( don’t run up to parents waving your own books.) why even be accused of taking over or making any of their decisions. After all if they mess this kid up then it’s not going to be your fault. Because it’s not your kid. When dealing with your feelings don’t give into gossip about the parents. Trying to stage a mob to get a parent to make decissions your way is not supporting anyone but you. Hard to hear I know but true! If you have a feeling you want to share share it with the parent not your friends or others say on the Internet. (ironic cause we are both reading this here 😉
    Ask. Yep this is the easiest part. Ask what can I do to support you. Ask this question prepared for an answer. If you don’t want to be burdened with support don’t even ask. Just keep walking. By leaving the whole situation alone, without giving crazy advice or stepping in to fix things, you have just became the best support system you can be. If you want to help though, asking the family what is needed and what is allowed will guide you. Flappinessis blog picture of the snow flake means a lot. No two are alike so even if you have supported an ASD mom/ dad before this mom/dad will be different.
    This is what I wish was said to my family and friends before we began our journey with living with ASD in the family. It would have saved us a lot of time a lot if drama and our kids would have been better for it. I write this from a place in my heart that is true. I’ve had good support and bad support the bad support never helped my children. I’ve been good support and not so good support too. I’ve made some of the same mistakes that others make. It’s important though to learn about being a support system before becoming one. I have learned that you can not support a person if you need support your self. I have learned to choose my support wisely. Just cause you go way back doesn’t mean they will be great support. And most of all even if you can’t be or ger the right support never give up trying with someone who is willing to admit when they are wrong and wants to support you the right way. Flappinessis has written a great blog post. This is not an attack on support people but a blog post on how to be more supportive.

  29. Victoria Meyers

    I think we do know what causes Cancer and Autism for that matter. I think that the more people talk about it, in and out of the Autism community the better. I think that sometimes people are a little too quick to be defensive.

  30. simpleijustdo

    Wonderful post! There are those in our lives who like to give us advice about anything, even when it isn’t wanted (think about all the “advice” foisted on you when you were pregnant!), and then there are those that feel like they need to help you because having a child on the spectrum is clearly a “problem”. I think confronting both of these types of people (in the nicest way possible) about their behavior is healthy.

  31. Angela

    Thank you – this was well said for any parent of a childwith complex needs. We also ‘gave up’ on a crazy schedule of therapy and are so much happier for it. Yes, I also see the value in empirically based treatment, but *everyone* needs a balanced life (and endless rounds of any type of therapy isn’t going to help this).

    BTW – my now five year old was not potty trained until just as he turned four. He’s been trying to drive the car since the age of two. I bet your son tries to drive the car too. So much for ‘drive the car to the grocery store’ as the benchmark for success (sarcasm;)

  32. Elizabeth G.

    Thank you for writing this. I appreciate it so much. I started my blog to share hopeful and humorous stories, to show that autism isn’t all a curse. My boys are who they are and will be who they will be.

  33. Neurotic Iraqimom

    I would have reacted the exact same way. I would be hurt. Very hurt. And I have every friggin RIGHT to be if someone comes along who hasnt gotten the slightest clue the emotional roller coaster we go through every single day. The worry, the fear. How dare they implicate we are not doing our job correctly? Who are THEY to judge us and who are THEY to even suggest we meet another mom just because THEY think we may not be doing the right thing. Oh please. That is just disgusting and humiliating!

    I know alot of times many people are stomped when they know I have special needs child. And I know that their intentions are good, but there are also people who tend to JUDGE US when they havent been in our shoes for a single day. And those are the people I do not and will not appreciate.

    I love your post..Its from the heart…

  34. chrissp1980

    Thanks for writing this. I don’t have much to add that hasn’t been said in other comments but I just wanted to say that I thoroughly ‘enjoyed’ reading this (if that is an appropriate word to use). As a speech and language therapist I think even professionals are guilty of this kind of thing (even if unintentioned) so your words serve as a reminder to all of us to treat people as individuals whether or not they have any sort of condition that labels them as ‘not being normal’.

  35. Laura

    I read your post and every word you wrote I have thought many times in the past six years. It is a process of accepting the reality of being a parent of a special needs child that has stages-denial, desperate hope to find a cure to help your child, anger (really pure rage) at people who want to help but have no idea they only hurt. Why should I have to be nice as society dictates to these people who should think before they open their mouth? I had a three year old who was not talking, potty trained, not even walking. I now have a six year old who walks, talks (not socializes but talks especially at home with me and his father), and is in school. He isn’t potty trained and I don’t stress over it too much. Put a pull-up on him and roll with life. It will come in time. The journey to this point was heart-breaking but undoubtedly the best I have ever lived. I never knew what pure joy was until I quit letting all those well-meaning people try to “help” me and just decided to love my child for what he is-what God gave me six years ago. Your son can teach you so many things-just let him. Enjoy everyday you have with your son. I found that constantly looking for new therapies and listening to other people tell me what they thought was taking away from being with my son and loving him for what he is but most importantly for seeing him grow and change each day. The changes may not be on the schedule other children have and at the same speed, but they will happen. My little boy taught me what pure love really is and it took thirty six years to find it. Don’t let other people take that away from you with their time-lines for development and charts for growth and kindergarten readiness guidelines.

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  37. MrsC

    May I just congratulate you on a wonderful post. My mother-in-law makes very similar comments to me and if I’m being honest, I cannot always tell whether she’s being judgmental, passive aggressive, or just showing she cares (as she claims in a guilt-inducing, injured tone when I ask her to just drop the subject, please).

    I do try to give her the benefit of the doubt. Perhaps she’s also grieving for the grandchild my son will never be, and is in denial to some degree because of this. If I put her comments into this context, it does help me to deal with it – a little.

    However, I am only human, and I am living daily under a great deal of stress which just DOESN’T LET UP. And sometimes I feel hurt and lose patience with what can feel like a deliberate lack of respect for my decisions, my judgment and my choices. I resent that *I* have to be attentive to other people’s feelings, opinions, reactions, when they will not extend that same consideration towards me.

    Thank you, again, for putting my feelings into words so eloquently. Again.

    PS: If I could thumbs up My Alternate Reality’s post a hundred times, I would. Well said.

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