How do you talk to a friend who is in denial about her son probably being on the autism spectrum?

Parent Cafe
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<p>Parents “know”…they do. What they need are friends who support them. They need friends who listen and answer (if asked) a specific question. What they don’t need are “friends” who diagnosis and judge. I know that friends mean well, but unless they are asked please be the rock that they can reach out to when necessary.</p>

<p>When I was diagnosed with cancer I took a friend aside. I told her what I wanted and needed to tell her and then said, PI needed to tell you. This is all that I know at this time. I do not want to talk about it." And she couldn’t stop questions. We were at a dinner party the next night. And yes, she told everyone… </p>

<p>Thank you for your input.</p>

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<p>Well, I don’t know that I thought it out exactly like that. What I was doing was addressing this particular boy’s situation. It sounds like his problems are far more in the social arena than organization issues. He appears to be struggling mightily in part because his parents are not getting him the help that he needs. The OP herself has said that “[h]e is aware he isn’t fitting in at school and can’t understand the exact dynamic of it. He cries about it.”</p>

<p>I just wish this child could know what is going on, have a label (i.e. reason) for it, and get help. Here’s why I think that this boy, if he has autism (and I’m not going to diagnosis him) needs to see the positives in it: He is already focused on all the negatives of his life and is unhappy. If he does have autism, he doesn’t need to think, “This is a terrible, horrible thing that I’m stuck with forever.” He needs to hear something like, “You have autism. It makes life more difficult in these (X,Y,Z) ways, and it will be a struggle. However, because of this you have these (A,B,C) strengths. We love you for who you are and will support you. We want to help make life easier for you, so we are going to help you and we’re going to help other people understand you.” He needs to know that there are many other people like him and that there are success stories. He needs to be given something to feel positive about. He doesn’t need to continue to feel like a failure.</p>

<p>What should the OP do? I don’t know. She sounds like a good person who is trying to navigate both a friendship and concern for a 12-year-old boy’s well-being. I suggested that she just “happen” to have one of Temple Grandin’s books around when she’s with the mother. Maybe that’s as far as she can go. If the mother asked about the book, she could say something. I’m torn somewhere in the middle between the people who advise the OP to stay away from the subject and just be supportive and the people who advise her to say something for the good of the boy.</p>

<p>I, personally, would want someone to say something. After years of not knowing what was going on with our son and medical doctors and educational consultants who didn’t have an answer, we had a family member suggest autism to us. I will be forever grateful for that suggestion. We immediately scheduled an appointment with a specialist and were relieved to get a diagnosis that connected all the dots and gave us a direction.</p>

<p>TempeMom – Do you know whether any teachers have talked to the parents about him? Have they suggested autism? How have the parents responded?</p>

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<p>I think I understood what Marsian meant. I think having autism is a devastating thing, especially in the beginning. I live in a world apart from the rest of the world. I am with you all, I am among you all, but I am apart from you and I can never be like you. I live in a bubble in your world, and I can’t escape and join you. That’s never going to be easy. It is isolating. I am here, but I am forever invisible. I am forever trying to force a square peg into a round hole, in a world where the round holes resent the square pegs differences. However, having autism and not knowing about it is worse, not better-- that makes the autism diagnosis a good thing, executive functioning difficulties (which I have in abundance) and social problems and all. It may be hard to hear if you were hoping it was going to go away, but you can’t start to help until you know what you’re dealing with. And to know that your brain is wired differently, and that you are not stupid or dumb or lazy, can be life saving. I beat myself up for years with, “I am X years old, I should be able to do this, why can’t I do this?” with no answer but “Apparently I am stupid.” And there ARE some positive aspects to autism. My entire personality is built on an autistic foundation, everything about me is affected by my autism-- there is not a normal person trapped inside me in an autism-shaped cage, I am autistic through and through. It colors my perception of EVERYTHING I think and feel and do. It is impossible to separate all my traits and say “okay, here are all the bad ones, those ones are autistic, here are all the good ones though and they’re neurotypical.” It doesn’t work that way. If it helps some parents, and indeed autism sufferers themselves, feel a little better about the negatives to think about and identify some of the positive aspects, I don’t think we have to jump to the worst possible conclusion that they are trying to minimize the negatives. I don’t believe they are, it’s impossible, not if you are in this world and living it, even secondhand watching your child live in it. They are just trying to make the unbearable bearable. And for someone who is dealing with that initial devastation, that can be helpful. You need to be able to see the glimmers of hope that show you why this life is still worth living. Otherwise, the truth may be too hard to accept and then you cannot make progress.</p>

<p>There are some in the autism community who are really supportive of autism as a culture and are against any idea that it is negative at all, they think it is solely different and not a disability. I think that’s taking it way too far, it is extremely narrow minded. Autism is much more than the highest functioning in the group. I do think, if we lived in a world that is designed for people like us instead of people like you, many of us would not be disabled anymore-- I wouldn’t be. And there is something to be said for seeing that, that much of what is “wrong” with me is only such a big problem because the world is designed for the majority and the majority is just different from me. However, it is important to realize that not everyone is high functioning, many families are suffering DEEPLY, and that cannot be minimized. It can be a massive disability, and high functioning autism is a double edged sword because everything we CAN do is used against us to prevent us getting help with the things we CAN’T do. Especially those of us with high IQs who have the skills to “pass” for neurotypical, to mask our difficulties, we are expected not to really have difficulties when we can be dying inside. You can’t minimize that. But you do have to live with it, and personally I don’t know how to do that without also acknowledging some of the positives aspects of my autistic personality that I can find. I can’t imagine dealing with the initial horror and despair without that. Of course nobody wants to be autistic or wants their child to be autistic, and I don’t think that’s what Marsian meant, but if you ARE autistic it is a good thing to hear it so you finally know and you can start figuring out how to deal with that, which includes acknowledging all the bads and the goods, too.</p>

<p>You can take the diagnosis for granted, you know, it is really hard for some people to get and those people are still autistic and going on with their lives thinking they’re just dumb and inept. By the time I was finally diagnosed it was an overwhelming sense of relief to finally know I was not crazy and there really is just something different about me. Having autism didn’t become more devastating when the label was applied, I knew it was devastating 10 years ago when I was starting high school and thankful to be able to disappear in the crowd so people would finally stop torturing me, or 20 years ago when the kids on the playground told me I was “too weird” to play with them. I knew I was broken inside my whole life. The label didn’t make that any worse. It did tell me, though, that it’s not just me who is like this, and there’s a reason for it, and it’s not my fault and I can forgive myself and move on with learning to cope with it. If someone doesn’t tell you this is permanent when you’re a small child you figure it out when you’re an adult and you’re still in hell and you don’t know why.</p>

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<p>This is a really fantastic post, Ema - I want to thank you for the insight that you are providing those of us who are unfamiliar with this. </p>

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<p>Well in fact I think depending on where on the spectrum one lies, many students can learn to interpret social signals, just in a much more cumbersome way than neurotypicals. I know when my older son was diagnosed with Tourette’s (but so mild the neurologist didn’t recommend treating it), that it was a huge relief for both my son and me. It meant we could stop nagging about annoying behaviors, and he could stop secretly worrying about them as well. As it happens he seems to have been someone who grew out of most of his most noticable tics, and it started with the diagnosis.</p>

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<p>Thanks Ema7.</p>

<p>OP, I had an elementary school teacher suggest my S was autistic; perhaps use my reaction as a surrogate for your friend’s.</p>

<p>I was surprised. Not that my S was having social problems in school, that was not new to me, but by her suggesting autism. Like one of the posters above, I knew he had issues and had put all my energy into helping him feel comfortable with himself and his peers. (He was and is super smart, academics have always come easily, but he would be paralyzed by social anxiety, afraid to take the risk to go play with other kids. During his early years I let his academics take care of themselves, and worked on his social skills. ) I thought we had overcome his social issues, and I had ruled out autism as the cause. When this teacher, who I had lots of respect for, suggested there was an issue, I took action. </p>

<p>We contacted a psychologist to evaluate him, and I went into the school to observe how he behaved (I thought he had put his issues behind him). I got the teacher to list all the concerning behaviors she observed. The teacher had indeed picked up on some troubling behaviors, but they were not due to autism----it was the social anxiety again. </p>

<p>I was grateful to her for telling me my S was having trouble. I was able to take steps to help him. At the same time, there was some resentment that she had labeled him incorrectly. She was an accurate observer, but no diagnostician. She didn’t “get” him. My feelings toward her were cooler for awhile. </p>

<p>In the case of your friend, I don’t think I would push a diagnosis, but would be willing to talk about her son whenever she wanted to. I would suggest to her seeing a specialist if she brought up problems her son was having. I would suggest to her talking to the boy about how he feels, whether he has any insights into his situation. (Listening to Ema7—he may be hungry for information about himself.) Ages ago there was a book by Perri Klass (I think) about eccentric kids. I can’t remember the name of it. I remember it being a gentle exposition of the kinds of differences you can find in kids. It was nice/pc/gentle enough that I once shared it with a friend who had a son who had some issues… but she was actively trying to help her child. </p>

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<p>You are a wonderful, dear friend to care, which means your only option seems to be Tough Love. Preface it with that you love her and you love her son and that is why you feel you must speak up. At least you will know you’ve done your best. Hugs. You are a good person.</p>

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<p>I think it’s also important to know that many of us are burdened by ways we feel different. There’s great variety in what neurotypical means, too. Even people who would’t get a diagnosis struggle with missing cues or a host of uncertainties. When my kids were little, I had to somehow grasp that- we all go through that. In no way do I mean to downplay- just to say, there isn’t always greener grass on the other side. </p>

<p>Ema, you’re so valued for your words and perspective. </p>

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<p>Perri Klass’s book is called Quirky Kids.</p>

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<p>Ema – Your post brought tears to my eyes. You are such a good writer, and your description of what it’s like to have autism is so moving. What your post should remind us all is that however our brain is wired we have a common humanity.</p>

<p>Now I have a strong urge to hug my son and tell him how much I love him and how wonderful he is.</p>

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<p>A couple things from the OP’s original post stuck out to me – the boy’s behavior and the mother’s frequent need to discuss it.</p>

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<p>Intensely angry and/or disturbing outbursts coupled with a mother who has to “unload” about it a “couple times a week” is apparently a problem for the OP, so perhaps it’s not the boy’s mother who needs help here.</p>

<p>OP, are you concerned that, without intervention, this boy may become violent? If the parents are aware there’s an issue, whether they know the exact cause or not, there may not be much you can do to convince them to get a diagnosis. </p>

<p>Do your kids feel safe around him? If not, that’s a separate issue. I wouldn’t let my kids play with kids who had anger issues and were prone to disturbing outbursts.</p>

<p>(Edited for spelling because I just can’t help it…)</p>

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<p>Ema–love your posts and your presentation of the way you feel about the world. Thank you for taking the time. </p>

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<p>Ema writes:</p>

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<p>Ema makes the point, and I want to underline it, that she is exceptionally high-functioning for someone on the spectrum. She’s probably in the 99 percentile of function, for someone on the spectrum.</p>

<p>I’d also like to talk about her idea that if the world were designed for people like her, and me, and my son, we wouldn’t be disabled. It’s easy for me to imagine a world where the social skills deficits of autistic people didn’t matter-- it would simply be a world where all this mysterious non-verbal communication didn’t exist, where people were not expected to comprehend non-verbal signals.* It’s not so easy for me to imagine the world where executive function deficits don’t matter.</p>

<p>I’ve been on CC for years, and have seen parental reports of the college success, or lack of success, of their spectrum kids. The ones with social difficulties seem to manage, though depression is a serious risk. The ones with executive function (EF) difficulties are the ones who come home after a quarter or a semester or a year. It happens every spring-- another anguished parent or two with a spectrum kid with EF difficulties who failed at college.</p>

<p>*Speaking of non-verbal communication: Sometimes I’ll read a novel with a plotline where two people meet and fall in love, although they don’t have a language in common. I understand it sometimes happens in real life. And it has always been completely mysterious to me. I can’t even imagine how that would work. I just can’t comprehend it. That’s probably because non-verbal communication is pretty much a closed book to me.</p>

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<p>OP here. Continuing to read your thoughtful posts. </p>

<p>Someone asked…
About Dad. Dad is a programmer. A bit eccentric himself, surely very introverted at least. Surrounded for the last couple decades by other programmers. He isn’t a person overly concerned with social niceties and tends towards black and white thinking that I suspect is typcial of programmers. He is involved with his kids. When the kids were little I thought in many ways he was the “best dad” in our group because he’d get down on the floor and roll around with them and chase them with imaginary swords, etc. I think his head space is being used to and accepting of the eccentricies of very literal/analitical people and socially being from a culture where labelling mostly happens only to the “worst of the worst” which his kid surely isn’t. He likely thinks he isn’t exactly like lots of other kids which is ok to him. (But notably the situation is getting more stark as the kid ages so…)</p>

<p>Someone asked about teachers…
This part is vague to me. I think two teachers or administrators in the past three or so years have said something to my friend. If I recall correctly it was more of “he’s not typical” type language and an allusion to testing which confused my friend. Because she is a-ok with her kid not being “typical”…she has no desire to raise a kid who is a mini-frat boy (for lack of a better term) who will grow up to be a banker/lawyer and totally ok with a kid who has a rich imagination/is a deep thinker/obsessed with Mars etc. Testing was mentioned by someone but again I get the impression that people are using such vague language with her (ie being careful not to use inciteful words or a diagnosis much like was said here) that she isn’t clear what they MEAN. She isn’t getting the subtext clearly (and she is very analytical and subtext isn’t her best thing). He was tested for the gifted program and didn’t get in. She thinks he just wasn’t interested.</p>

<p>Someone asked about violence/how often mom vents…
I don’t think he is violent. I’ve never seen an outburst but I have occasionally heard about them afterwards. I gather they are more of the minor property damage tornado/shouting variety. Emotional outbursts. My friend and I talk at least twice a week usually for 30 plus minutes on my way to work. Some days she mostly talks, some days I mostly talk, we both vent about our kids/spouses/dogs/PT/work whatever. Her venting isn’t a problem for ME, other than I don’t like to see her banging her head against the same wall day after day. Her venting about her boy is more generalized frustration these days which I think reflects the fact that her concerns about him are more global than he never remembers to …blah blah blah. </p>

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<p>We wouldn’t have the wickedly creative sorts who test bounds, those who are dogged in their research, those who love breaking down minutiae, and more, if everyone was “normal.” </p>

<p>Where it goes bump in the night is when someone, young or old, seems to have trouble adapting to a baseline, when it is called for. We need to adapt to school, work, relationships- when it’s not innate- and when it is called for- one can struggle. </p>

<p>Not everyone fits in the same box- and just because all the rest seem to, that doesn’t mean “normal” is necessarily right and the “different” one is somehow wrong. It’s when you see them struggling personally, feeling like they are missing out, maybe not happy or maybe excessively frustrated, that your heart goes out to them.</p>

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<p>And we wouldn’t have a lot of great literature and great art if nobody had depression, but you can’t tell me depression is good. It may be good for society that depression and autism exist, but it’s usually bad for the person with depression or autism and that person’s family.</p>

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<p>OP. As I have said here before my dad is bipolar, he is published, accomplished and the most creative person I know. He has done amazing things. He also refused to take a diagnosis for 65 years and has burned though more relationships (including familial) than most people you’ll ever know. So I get it. </p>

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<p>CF, depression is an example of when it does hurt, no question. Also, drugs and death. Tears, humiliations, loneliness, outbursts. More, I am sure. When the negatives get in the way, it is good to have help. In this thread context, I was less worried about the Mom friend, than for the boy. Only OP is close enough to have her own impressions of him. </p>

<p>I think a lot more of us than we realize are still adjusting and adapting to others’ expectations. Frustrated by our own frustrations. Wondering why people don’t get us and we don’t get them. But still, some people with challenges do find their path, do find friends like them, find outlets, work that needs their results, not their social skills. Again, it’s when something hits a crescendo- or looks like it’s headed there- that help helps. </p>