feedback for "Dear Stranger"

1. Wow.  My heart goes out to those families. A cousin of mine has an autistic daughter, and they were fortunate/acute enough to get her into early intervention when she was barely two. What a difference!!!  Of course, it's 6 - 8 hours of intensive training (is what it looks like) every weekday, but because of that early groundwork, Sophie (at 6) is SO much more communicative and even affectionate.
   
   Their insurance pays 80% of the cost, otherwise they'd not be able to partake of this cutting-edge education.
   
   

   posted by : jenseju on 9/13/2007 at 10:05 AM Flag For Abuse

2. I have to say I disagree with you. But then again, I am coming from a very different place. A parent "knows" their child more than a stranger in the room and with everyone on such heightened alert with autism, every parent thinks about it.
   
   As the mother of a very late talker (he's just starting to talk now at 27 months) I was approached at tedium from worried parents like you who thought it was their obligation to diagnose my son based on very limited information. He loved spinning things. He was a late talker and walker. He was doing things differently than their kids.
   
   It was infuriating. At 2 years old Archer was tested and cleared of Autistm. He was tested through Early Intervention and diagnosed with speech-delay and a case of stubborn independence. He is about to start his first session of speech therapy next week, even though he started talking several weeks ago.
   
   My point is,  it isn't your child or even the child of a friend. You don't know as much as you think you do. And most importantly, if you're worried? The parent of the child is a thousand times more worried than you are.
   
   I respect your opinions, of course, but I wanted to share my perspective with you. As a potential "stranger" in your classroom.
   
   
   
   
   
   

   posted by : GirlsGoneChild on 9/13/2007 at 12:05 PM Flag For Abuse

3. I have mixed feelings about this. I agree with you that we're all responsible for one another on this planet, but I also think you have minimal contact with this child so mentioning autism to his mother, who spends every day with him, would most definitely make her bristle and worry, perhaps without warrant. That said, it sounds like you handled the situation in a good way -- by approaching the nanny with a seemingly inocuous, helpful comment. (Whether the nanny will pass it along is another question.)
   
   I am grateful that you've raised these points about pediatricians not paying enough attention to the warning signs. Awareness and action are definitely key.
   
   Your article has made me ask myself some tough questions about how I would handle such a dilemma, and I appreciate your candor.
   
   

   posted by : MelloMama on 9/13/2007 at 2:00 PM Flag For Abuse

4. I disagree with your husband, that you have a "moral" obligation to thell the mother that her son is autistic.  You can have whatever opinions you like, but you should keep them to yourself.  The parents are perfectly capable of coming to their own decisions...their own friends and family may have made enough comments.  She doesn't want advice from a stranger in a music class.  Our society is so "over generous" with its criticism of our parenting styles already, do you really think you would be received well?    

   posted by : bombaygirl on 9/13/2007 at 2:09 PM Flag For Abuse

5. I read this with great interest, and I understand what a complex issue it is. I've been on both sides, as the parent of a special needs child who desperately wanted to say something to another parent who was likely about to go down the same road I've been on, but also as a parent who already suspected that something was different about my child, and did not need to hear it from a total stranger.   My daughter has mild Cerebral Palsy, and we are waiting for an assessment of her social and communication skills. I know we'll wind up with a dx on 'The Spectrum', just as I knew we'd wind up with a CP dx months before any doctor actually uttered the words. And I'm ok with that, but I still have mixed feelings about the mixed reactions of others. When I try to talk about my daughter's issues with some people, they say " Oh, you're reading too much on the internet. She's fine. There's nothing worng with her." But they don't see what I see and know what I know and their attempts at reassurance make me feel like I'm a paranoid mother looking for a problem. On the other hand, everytime an observant someone asks a pointed question about her development or behaviour, or gently comments that she seems to "be in her own little world", I want to scream "I know damn well she's not like the other kids! Why did you have to remind me that she's obviously different!" And other times, I want to talk to someone who might know what I'm going through, and  I'd appreciate someone with experience making the effort to make the connection with me. My general policy is to keep my mouth shut, and my eyes and mind open. If I get a sense that another mother is in the same boat as me, I might start a converation and open up about my own experience a bit to see where she's at in the process.  But only if I think she already suspects something herself.  If  she's still in denial, or if I don't have enough information to go on, I keep quiet.  Thanks for this piece, and for opening up the discussion on a sensitive topic!

   posted by : domesticblister on 9/13/2007 at 2:33 PM Flag For Abuse

6. A very interesting article that definitely raises a lot of questions. There is one option I feel has been overlooked. As an educator of preschoolers in an extracurricular setting, I feel another option is to discreetly approach the teacher with your concerns and candor. In many situations these instructors see hundreds of kids a week and have a fairly unbiased view of where children fall on a developmental spectrum. The teacher may also have developed a relationship with the parents (something that is essential with educating this, and any, age group) where a suggestion to go and see a professional would be heard in a safe and supportive way. I have witnessed a number of occasions where parents have approached other parents, even with the best intentions, and it was not received well. Introducing a third party (the teacher) removes the potential for hurt feelings and keeps the learning environment free from any feelings of judgement and disrespect... while addressing an issue that clearly needs attention. Further, many educators of preschool aged children have built community connections with professionals and may be able to make specific suggestions/referrals.
   
   I understand this option is dependent on the age and maturity of the instructor... just something to consider.
   
   

   posted by : jumpgym1 on 9/13/2007 at 3:32 PM Flag For Abuse

7. I've been there, and it's not an easy place.  I'm an occupational therapist who works with children on the spectrum.  Nine times out of ten, I can spot a child with autism across the room.  As a mother of a child with autism, you probably can, too.  For the occasional child who simply does not yet speak or has a few endearing quirks, there are countless others who need help.  I also understand your desire to help and offer heartfelt support--not to judge or soothe yourself that you are not alone in having a child with such complex needs.  But when my nephew was only 18 months old, and having only seen him a few times a year, I kept my mouth shut.  He "played" by repeatedly flicking his finger in and out of a playhouse window for fifteen minutes.  He avoided eye contact and seemed unaware of the people around him.  He spoke in what my brother affectionately called "Swahili."  I knew there was a problem, but I questioned myself and  couldn't be the one to bring it up yet.  I gave myself a few more months to observe him and set a date to have "The Talk" if I was still concerned.  My brother called me two months later to ask me what information I could offer because D. has autism.  I'm not sure that my brother ever understood my hesitancy to have brought up my concerns.  But he also knows my line of work and could have come to me had he been ready to deal with things.  Damned if you do; damned if you don't. I think your approach of offering some generic, helpful information was very wise.  If I'm ever in this position again (and I seriously doubt it won't happen), I'll remember what you did. 

   posted by : BabyCakies on 9/13/2007 at 3:33 PM Flag For Abuse

8. I can understand your need to feel helpful, but I agree with GirlsGoneChild.  My mom hounded me that maybe my oldest child was autistic and it was annoying - and she's my mom, someone close to my son and to me.  I realize that you probably are more aware of the "indicators" of autism given that your son has autism but are you seriously qualified to give that kind of opinion?  You interacted with that child for short period of time and the interaction was probably not as "direct" as someone from Early Intervention would have.  As far as having a "moral" obligation - I get that what your husband is saying and I would tend to agree.  However, I wouldn't go as far as to call it a "moral" obligation.   There are many ways of letting someone know that their child may have an issue and the way you went about it was a great way.  At least now someone in contact with the child has a hint and sometimes a "hint" is all it takes.  In the end, my son wasn't autistic.  He had regressed a little with the birth of our second son.  But, I know that if a perfect stranger came up to me and point blank said "Maybe your child is autistic" I would have had a problem with it.

   posted by : chgochick on 9/14/2007 at 6:38 AM Flag For Abuse

9. I have a friend with an autistic son, albeit a mild case and they deal with it quite well, as do most of their close acquaintances. I have 3 sons, none of whom is autistic, and I would probably react initially with anger if it had been me that was told by a stranger that perhaps one was. However, if I was told by someone with an autistic child, anger or not, I would at minimum strike up a discussion with my child's doctor and make damn sure I got the correct answer, no matter what. I will NEVER understand parents who put the child behind their own egos and image. I have a brother in-law with a Down's child and the only time this child is up front is with the family, otherwise it is a hidden embarrassment to him. What a shame for the child, and a terrible shame for the parents and siblings. Do what you feel is right, and if you lose a friend or acquaintance but save a child, you did the right thing. If you're wrong, wouldn't you feel better knowing that at least you tried?
   
   OldParrothead....Cynical, Skeptical, and father of twingles
   
   

   posted by : OldParrothead on 9/14/2007 at 9:47 AM Flag For Abuse

10. It is very hard for people to recognize disabilities in their own children, especially if it is their first child and they have little experience with children.  I noticed a language delay in my best friend's daughter as early as 2 years old.  Although I wasn't a mother at that time, I had spent a lot of time with young children as a babysitter, camp counselor and day care worker.  While not an expert, I have always been interested in child development and read articles pertaining to these issues.  I did mention my observations to my friend, who accepted my concern in the spirit it was intended, but did not follow up aggressively.  A few years later she was diagnosed with a learning disability and more recently with a hearing disability (cookie bite).  I now have a 7 month old and I think if someone noticed something in my child I would definitely try to accept it with grace and I would certainly research it to try to understand what they were seeing.  But I do understand how hard it is to accept that something may be amiss with your child.

    posted by : lilmissyny on 9/14/2007 at 4:53 PM Flag For Abuse

11. The media and autism organizations have definitely gotten the word out about looking for "signs of autism." I am glad that my son was in a daycare when he was 16 months old; it was soon apparent that he was different and he was diagnosed with autism just after he turned two years old, in 1999. Newsweek's article this week on "quirky kids" highlighted the pros and cons of whether to diagnose or not. I am hopeful that any "stigma" associated with an autism spectrum disorder diagnosis might lessen thanks to greater understanding and awareness of diversity, especially as there have always been autistic persons among us, though they might not have had any diagnosis.
    
    http://www.autismvox.com/quirky-nos/
    
    My son (now 10 years old) does not have a lot of language and he's tall and people notice that he is different at varying speeds. When he was younger, I did take him to some gym and music classes with neurotypical children. If I saw a child who I thought might be on the spectrum and I fell into conversation with their parent, I would often make it clear that Charlie has autism and that's why he was doing, or was not able to do, X Y and Z. So that way I am bringing up autism in relation to myself and my son, but not casting any labels or judgments on anyone, and sometimes a conversation starts from there. If the suggestion of a parent seeking out services arose, I made it clear, there is much to be done---a diagnosis is not a death sentence---there is so much hope. My son and his dad and I are a tight unit and we can't imagine life without each other.
    
    Thank you for this post. It's a very important topic.
    
    Sincerely,
    Kristina Chew
    AutismVox.com

    posted by : autismvox on 9/15/2007 at 10:13 AM Flag For Abuse

12. http://girlsgonechild.blogspot.com/2007/09/stranger.html
    

    posted by : GirlsGoneChild on 9/15/2007 at 1:05 PM Flag For Abuse

13. << it would be unbearably cruel to unnecessarily send any parent into the emotional tailspin that follows such a diagnosis.>>
    
    Yeah, but you're not the one doing this to the parent! All you're doing is raising a possibility, not making the diagnosis. And the diagnosis is what creates the heartache, not your participation in uncovering it.
    
    That being said, I could definitely see how it would be beyond annoying to have random "concerned strangers" repeatedly calling attention to my child's late development. There are so many competitive mommies out there who just love to play the "oooh, my kid doesn't have your kid's problems" game.
    
    There's no easy answer, but I'd sure like to see how your husband would tackle this one if he were in that situation. He might not be so dismissively sure of himself if he had to see the effects of his words firsthand.
    

    posted by : madfoot on 9/15/2007 at 3:27 PM Flag For Abuse

14. I have 2 sons with autism. We can't tell these folks what's happening, but we can let them know that we understand how frustrating it is to deal with a late talker not being able to communicate their needs. Then share your experience with the success of starting speech therapy as early as possible. Let them know that there is a program called Early Intervention that pays for the therapies for kids under age 3. Drop the fact that all kids born preemie automatically qualify for these services and can start as early as 6 weeks of age. This helps them feel better about their 2 year old going for speech Keep the contact info for your local early intervention in your address book with the rest of your heroes, NOT on a business card like you are trying to sell them something. This will give the parent "permission" to see that maybe asking for help isn't so bad.   Both of my sons were cleared of autism by a developmental pediatrician, child psychologist, and neurologist. I was told that they were both delayed, quirky, and strong willed. I had to finally take them to a new psychiatrist, along with their speech, occupational, and physical therapy evaluations, and TELL the doctor that I know they have autism and just need someone to put it in writing so I can keep the funding for the therapies. He was shocked that the boys had made it their far without the diagnosis.  

    posted by : AnnaMKyle on 11/1/2007 at 11:18 PM Flag For Abuse

15. Comparing autism to a tumor....nice.

    posted by : autiemom on 4/3/2008 at 10:14 PM Flag For Abuse

16. To the author: the rate of autism you have quoted in the UK is incorrect and the researcher this has been attributed to has also stated that this is incorrect. Here is a link to an article that quotes this researcher and explains how and why this number is incorrect but widely quoted:
    http://holfordwatch.info/2008/04/06/1-in-58-have-autism-redux-i-blame-the-observer/

    posted by : Autie on 4/14/2008 at 1:12 PM Flag For Abuse

17. I wish someone had urged me to consider autism when my son was younger. Instead, I was told he was going through a stage, he was displaying normal toddler/preschooler behavior, and that he was just a really smart kid. I felt like I was looking for something wrong in my son. I stopped researching and simply accepted the fact that his meltdowns and uncooperative and quirky behavior was a reflection of my poor parenting ability. In first grade, when he was six and a half, school personnel recommended that he be evaluated for Asperger Sydrome. Of course we went through the rollercoaster of emotion about the possibility of having a son on the autism spectrum. He was diagnosed with AS nine months ago and already he's like a different child. Between us understanding what's going on with him and services targeted at increasing his social skills and understanding of who he is, the meltdowns have almost disapeared. He is a happy, smart, and quirky second grader. I still ache over those years when I was burdened with the guilt about being a bad parent. I wish we had someone intervene earlier.
    
    Excellent story that brings up a lot of food for thought for ASD parents.

    posted by : Mom f Aspie on 11/20/2008 at 4:10 PM Flag For Abuse

18. Bravo. I am constantly seeing warning signs in other kids and was aware that my son could be spectrum from the time he was about 5 months old. Actually from the time we brought him back from the hospital I was on watch. I knew the signs because, 1. My mother has worked with spectrum kids for about 20 years and 2. My best friend's child has full blow and his second son is much more on the mild side. Every time I pointed out I thought my son was spectrum, EVERYONE told me "oh, he's son young, he's just difficult, he's just headstrong, he's not talking well because you talk too fast, he's just excited that's why he flaps his hands, he just things automatic doors are magical." But I knew different. I had crappy early intervention evaluations that denied him services telling me that he wasn't talking because he just had low muscle tone in his mouth. What crap! I took it upon myself to go private. My husband I went for broke, but is saved him. He's totally mainstreamed, has lots of friends, tries to control his flapping and can have full fledge conversations. I only found out later that his preschool was hesitant to inform me that they thought something was wrong. If they would have notified me I could have used that as ammunition to fight EI and get him free services.
    
    I always bite my tongue when I see kids with soft signs. I am a children's photographer and sometimes I see things in my clients kids. If a parents starts to mention their kid's behavior, I can tell they are fishing for into. I am not ashamed of my son and always share our experience with him. I want to help. I feel the need to help because I am a believer in reversal. I feel that Autism isn't a mental disorder but a state of mind. Each child is in their own private state. You can tap into that "state of mind" and unlock the door if you get it EARLY! From the minute I saw my son respond to his name, I was constantly in his face. I socialized him even if he fought me. If I was social, he would be social. My husband and I began teaching him techniques for him to control his stims by limiting the behavior. It saved him. But only because we did this BEFORE he was 2! If parents refuse to see it, it may be too late for their child. I feel that we live in a generation where parents all think their child is 'perfect'. NO child is perfect. But they are all fantastic.

    posted by : summerblu on 12/30/2008 at 11:45 AM Flag For Abuse

19. This was really interesting for me to read. I have a close friend whose son is clearly on the spectrum. Even though I know nothing about autism and haven't been around autistic children I could tell something was different about him from when he was very young. Sure enough, she has been getting indications from playgroup teachers, admissions officers at many schools, and many more overt "hints" that her son is on the spectrum for years. He is now almost 6 and she still won't accept that he may have AS or something like it; she is wildly upset, hurt, offended etc when someone, even a professional, a teacher, another parent, mentions the autism spectrum. It is easy to judge her and say what she should do; what her son would benefit from. But I have come to realize that she is who she is and she loves her son deeply and is -- although not having him treated for autism -- caring for him with all her heart. I am saddened that she can't accept a diagnosis as something that would help her and her son but she won't. When I have tried, gently, to suggest that she get him treatment, she gets upset to the point of hysteria. I know that if I press it we will not be friends. Maybe one day, before too long, she will seek help. But she isn't going to because people, even friends who love her, tell her to (much less strangers.) What I have been told is that as soon as the child enters the school system and is diagnosed/referred for diagnosis by a teacher the state will intervene. I can say, from my experience, that a stranger coming up to my friend and suggesting that her son is on the spectrum would be no help at all and possibly quite harmful. Other people are other people. Not everyone is well adjusted and not every story ends happily. And there is nothing we can do about that. I think the other commenter who pointed out that the author of this excellent article may want to examine her own desire to point out another woman's child's autism is right on. We are all complex creatures, moved by forces that we don't understand, and it can be cruel verging on sadistic to tell a woman you don't know that something is seriously "wrong" with her child whether or not you are right. Odds are the woman knows, whether she admits it or not. And it is her path to reckon with the twists and turns in her life. It is not for you to force her to "acknowledge" a truth. Or, really, to tell her how to care for her child. The truth, in the end, will out.

    posted by : wpane on 2/2/2009 at 2:24 PM Flag For Abuse