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>Which is in total contrast to what many are saying here, that it’s better to just let this family flounder rather than take the chance of insulting them by saying something. It sounds like people with kids with special needs and/or learning disorders often say they wished they’d known sooner about their child’s problems because once they knew, they were able to do x, y, and z and it helped immensely to at least know what they were dealing with, etc., etc. And yet there is a clear message in this thread that MYOB is the order of the day.</p>

<p>It’s confusing to know what the “right” thing for the OP would be. Obviously, she cannot diagnose the child, and so should stay away from terminology which should only be used by those qualified to diagnose, but to say nothing and just watch this family continue to suffer seems woefully inadequate imo. As someone else pointed out, what’s more important, hurting someone’s feelings/ruffling their feathers, or at least pointing this unhappy child towards a direction which might offer some much needed information and help? </p>

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<p>AuthorMom, I would love to have a curriculum to teach executive function. Suggestions?</p>

<p>Nrdsb4, most of us who are saying that the OP should tread lightly are not doing so because we think it’s a good idea to let the family flounder. Rather, we are saying that directly telling the friend that her son likely has Aspergers, while true, is not going to have a good effect. It won’t work. It’s not a matter of valuing the friendship over the child’s welfare. Rather, it’s valuing the friendship over futility.</p>

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<p>@CardinalFang, I’d be happy to help. :slight_smile: If you message me what you are looking for, I can do some digging for you, etc. </p>

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<p>I was going to PM this since it’s long and a bit off the topic, but I thought a few people might find it interesting… forgive me if I am wrong…</p>

<p>"I’m going to ask an extremely ignorant question, and I recognize I’ll get slammed for this, but here goes.</p>

<p>Ema and others who have posted about this. If you are self-aware enough (and clearly you are) to know that you have these tendencies / behaviors, why is it not possible for you to work on them? For example, I <em>know</em> I’m an introvert. I’m happy by myself, I can travel around the world by myself and enjoy my own company, and it sometimes doesn’t even occur to me to call home - but I know my husband really likes to hear from me, so poof, I adjust that behavior so I make sure I call home when I’m traveling, I tend to get to the point in conversations at work, and I know that task orientation doesn’t work with people who want to hear a little bit of the “hey, how was your weekend” before diving into the task at hand - so I “coach myself” to engage in some of that small talk before I jump into work tasks. That type of thing. I know nothing about being neuro-a-typical (is that a word?) but I don’t quite fully get how one could be self-aware enough to know of a tendency yet be completely at a loss as to how to correct it, or at least perhaps adjust it.
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<p>Asked the way you asked it, it is not an offensive question. Most people with autism are nowhere near as self-aware as I am, that is part one of my answer. I am an anomoly and should not be thought of as the standard for all or even many high functioning autistics or those with aspeger’s. One of my doctors once mused that introspection and emotional understanding are almost my “special interests,” as is disability advocacy-- so I am uniquely interested and practiced in skills that most people like me do not have.</p>

<p>Part two is that most of us who are self-aware enough to know what’s wrong do work on it, but improvement is very slow. It took me until I got into the working world to start learning really good reciprocal conversational skills-- though you have to take into account I didn’t know there was anything wrong with me until I was 20 so I didn’t start working on it until then. I just thought people were mean and nobody liked me for some inexplicable reason prior to my diagnosis. By now, I am getting to be better at making reciprocal and interesting small talk. Other skills though, for example, facial expressions, hand gestures, and certain conversational skills are just damn hard to learn. Think of it this way, say you know how to speak English You want to learn to speak Spanish, but you’ve gone deaf and blind-- how do you do it? That is kind of what it is like. It is hard to emulate language (think non-verbal communication as a language) when you can’t perceive the language. </p>

<p>I also had an experience a few years ago where I was looking at a webcam where I could see my own video stream in the bottom, and I thought I was making a facial expression, and I realized looking at the video that I wasn’t. I feel my face moving when I talk so I think it is, but the movements are so subtle they aren’t really visible. I try to make them more exaggerated, but then they look ridiculous, so I don’t bother. Imagine if I said to you, “well, why don’t you just try to do a back handspring?” If you don’t know how to do it, you can’t, and this is no different. So my face is just flat. People who know me well learn to pick up on my faces but strangers just think I am a b<em>tch, which makes me really sad. </em><strong><em>Then there’s the fact that ANY effort to cover my autism is like trying to put on a show 24/7, it’s exhausting and I have a finite ability to cope-- I think we all do. On a normal day I might cope really well, but if I am sick or really tired or stressed, my autism gets worse. Some days I do not have the energy for the fake smile.</em></strong>* I tell my fiance, “I am having a bad autism day.” Some days I am almost a normal 24 year old, some days I feel 8 years old again.</p>

<p>The biggest autism issue that gets me into trouble in real life is something at home with my fiance, and that used to be a problem with friends. The basis I think most of us (?) use to determine whether or not a request of someone is reasonable is if you would do that thing for them-- you ask yourself, “does that sound reasonable to me?” It took me 20 years to figure out I am willing to do anything for anybody and most people aren’t willing to do much of anything for me. Then, I also have this problem where if someone tells me something is okay, I believe them. So if I say, “hey fiance, could you stop on the way home for some milk?” and he says “yeah, sure hon” I think we are fine where actually he might secretly be fuming because I’ve asked him to pick something else up every day this week and it didn’t occur to me that it wasn’t really okay since he kept saying it was. As you might imagine, these two issues compound with HORRIBLE results. I am getting a lot better about it, but I have to think really hard in a way that goes against the grain of the way my brain is wired. If you tell me something is okay, I believe you. If I find out later that you’re actually mad, I feel like you tricked me. How do I work on that? I try to keep a running list of all the things I’ve asked my fiance to do and try to watch him for signs that he is overwhelmed, but doesn’t it make a lot more sense if he’d just tell me!? To me, it feels like neurotypicals ask me to read their minds. I try really hard to do that and am getting good at it, but it’s still mind reading.</p>

<p>There’s also the fact that most people just ignore us. When I was in school I went days at a time without even using my voice, it rasped when I would talk because it had been so long. In college, the girls on my floor didn’t even say hi to me when they saw me. I am relatively normal-- it took until I was 20 to get a diagnosis after all-- but my lack of facial expressions makes me look aloof and disinterested and people think I’m not a nice person, so they don’t talk to me. That doesn’t give you a lot of opportunity to practice, and it’s not like anybody ever stops you and says, “hey, do you know you suck at having two sided conversations?” The closest thing I ever got was after sitting across from a girl in class and then working with her on a peer review for a paper, she told me, “You are very different from how you seem.” I asked her, “how do you mean?” and she said “You look really aloof and disinterested and mean, but now that I’ve talked to you I’ve realized you’re really bubbly and funny and nice! What’s up with that?!” (if this girl hadnt been a little socially strange herself I am not sure that she would have said this to me.) Had I not known about my autism to know that my face doesn’t move much I’d have thought she was crazy. I had no idea about that until I sent the lists of symptoms to my parents and friends and they came back and highlighted that.</p>

<p>The thing you probably see on CC all the time is me posting things that are overly long or only semi-relevant (this post!?). I don’t do that on purpose. I actually type and retype most of my messages several times before I post them, trying to take out the boring or less relevant bits. Sometimes I type a long post and just delete it. I am trying to get better at guessing what you all would find interesting or relevant, but I am not always so good at that. It is nice to just get a chance to participate, too. You talk about things that are interesting to me and I don’t get the chance to listen to people talk about things that are interesting to me in very many other places.</p>

<p>This post may well be case in point, I really wanted to answer the question and couldn’t figure out how to do it shorter without removing things that seemed really interesting and important to me and to the question. I tried really hard.</p>

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<p>If I could like that post a thousand times, I would, Ema.</p>

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<p>Ema, your posts are wonderful, and so helpful, and it makes me sad that you are agonizing over them, and feeling almost ashamed of them, as you describe! I have not seen even a single sentence in your posts that was not incredibly insightful and educational, and so effective at communicating what your world is like. I think you could write professionally about this.</p>

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<p>Pizzagirl – I don’t think anyone will slam you for honestly wanting to know. </p>

<p>Self-awareness is one thing. Theory of mind (i.e. understanding how others think or feel or MIGHT think or feel) is different. Knowing how to work on behaviors involves understanding what others think of them and why working on them is important. Theory of mind is a problem for people with autism.</p>

<p>You said you “know” your husband “really likes” to hear from you. How do you know? Did he tell you? What did he say? “Could you please call me every day while you’re on a trip?” “I wish you would call me every day while you’re gone.” “Why didn’t you call?” “I miss it when we don’t get to talk every day.” “I miss you when you’re gone.” “I’ve been worried about you. Is everything all right?” (when you call on Day 3 of a 5-day trip) All these are different ways of saying “Please call me every day while you’re gone,” but only the first way would be clear to most people with autism. Could it be that your husband has never said anything but he calls you every day while he’s out of town, so that is your cue? Or do you just “know”?</p>

<p>Most autistic people would not “know” someone wanted to hear from them. They wouldn’t know from body language, tone of voice, or just “knowing” that they should call. They wouldn’t know unless the person said “You must call me every day while you’re on a trip,” or asked, “Would you please call me every day while you’re on a trip?”</p>

<p>That’s Hurdle #1. The next hurdle would be the what-ifs or permutations. Suppose your meeting on Day 2 lasts until after midnight. Do you call your husband if you know that he goes to bed by ten? If you do, does it count as the call for Day 2 or for Day 3? What if you text him or send e-mail? Does that count as a call? What if your cell phone stops working and you don’t know how to use the room phone? Do you have to go find someone who will let you use his/her cell phone? Even at midnight? These questions sound pedantic, but they are ones that many autistic people would have and perhaps obsess over. My son would obsess over them.</p>

<p>Autistic people likely don’t “know” what a problem is and have a hard time “knowing” how to work on it unless someone takes it step by step. Imagine the exhaustion at living life with all those hurdles, not the least of which is thinking that non-autistic people seem to be able to read one another’s minds</p>

<p>I recommend the book Emergence: Labeled Autistic by Temple Grandin or any of her other books. Emergence talks more about her childhood and her frustration at not understanding other people.</p>

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<p>Cardinal Fang, re: executive function skills… we hired a “life coach” for D. They often advertise as ADHD coaches but I think a big component of what they each is EF skills. Some specialize in kids, some in adults. D found it very helpful, and she only needed a couple of months to gather a sort of “toolbox” of strategies to cope with her EF weaknesses.</p>

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<p>Yes, Ema is an excellent writer. I like all her posts.</p>

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<p>Nice post, Marsian. That eloquently describes how complicated a seemingly obvious or simple social question can become. I would obsess, too. The scenario you described is pretty much my life in a nutshell. </p>

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<p>staceyneil, Thanks for the suggestion. It’s a good one. Of all the money we’ve spent on treatment for Fang Jr (a lot!) the best spent was his coach. She was fantastic. She did help him a lot, but he is at such a low baseline for EF that he is still has serious deficiencies. If only a few months of coaching would have been enough. We should probably see if she has some time in her schedule to fit him in for more coaching, maybe on setting up some sort of a social life so he doesn’t spend all his free time in front of a computer.</p>

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<p>Yay, Ema. Brave gal, your words inform all of us. Thank you. </p>

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<p>There may not be anything you can say or do to get the parents to check out what issues their son is facing. Some people just won’t believe it until they are absolutely in the corner with no way out.</p>

<p>My husband’s cousin is a case in point. When I first read about Aspergers and “the spectrum”, he came immediately to mind Textbook case. Typical case. Couldn’t fit better. The cousin was a young man, an adult by then, and when the subject was even broached, it went no where. Now, over 20 years, close to 30 years later, everyone agrees. Unfortunately, he has been through the mill, like been in jail, in part, in large part because of issues he has being on that spectrum. I don’t know if all of the pitfalls could have been avoided, but some of them certainly could have been.</p>

<p>I think many of us have some traits and behaviors that fall in to a number of DSMO categories, though maybe not be enough for heavy duty treatment (and then, maybe that could help). And even when we know we have these issues, it doesn’t mean we can control them. Often at the moment, we aren’t even aware we are falling into our own traps. So there are limitations to self awareness, though, absolutely it can help. </p>

<p>Sometimes it helps to give parallel situations and bring up the possibility of having certain traits as opposed to out and out giving a diagnosis, which I agree is something that needs to be done professionally. But that gives a family a direction down the path that may give options for treatments, counseling and ideas as to how to deal with given situations. But beyond that, if the person won’t accept anyone’s opinion, not much one can do, and pushing too hard could mean losing a friend.</p>

<p>Even with physical problems, one can have dear ones who refuse to recognize, much less address some potentially serious issues. I’m still drying my eyes on occasion these days because I recently got word that an old dear friend of mine, my age, has passed away. She was very heavy, always was. Very pretty but heavy, and as she got older, got heavier and the weight was considered by the doctors to be a major factor in her medical problems. Could not , would not lose the weight. I have my mother who did not stop smoking despite warnings and some very direct confrontations. She has been dxed with COPD which has hampered her quality of life considerably and limited her. She knew as she caused her own demise. With mental, behaviorial, judgement type issues, the diagnoses are far less clear. I don’t wonder a second how people cannot address these issues. They often can’t when it a problem hitting them right on the head.</p>

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<p>Ema, I appreciate all of your posts. You teach all of us. PG, you often get right to the point, which I like.</p>

<p>I realize I said “go for it” way back on page 1. Then again, no one approaches me with a problem about their child and doesn’t expect a professional answer. I never evaluate sons or daughters of even casual friends, but I do have a good referral network. I estimate I’ve probably been to 6 seminars on ‘the spectrum’ in past few years, from experts at Yale, Pittsburgh (where they have a short-term residential program), & Orlando. A local psychologist has worked in this area for 30+ years, and accepts almost all insurances. I’m careful to not offer an opinion based on hear-say, but to point the person to an expert, if I know that person or their reputation.</p>

<p>In the same fashion, I ask my lawyer or physician friends for referrals. If the same name comes up from a few people, I feel more comfortable making an appointment. </p>

<p>Like Ema, I started another paragraph, but decided to use the delete feature.</p>

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<p>Thank you, Ema and others, for answering me in the spirit with which the question was intended. </p>

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<p>It can be hard to get access to testing, too. It can be expensive and many insurances don’t cover it. When I was looking into it, it looked like it would cost me $5,000. And unless I was seeing a true expert on high functioning autism who had actually worked wit autistic people before, I probably would have gotten the wrong diagnosis. My experience is that not very many so-called professionals are experienced enough to recognize autism in an older child, adult, or female. Misdiagnoses of ADHD are common, in both directions actually. </p>

<p>I managed to get tested for $50 by participating in a study at an autism research facility on my university campus, thanks to someone on CC suggesting that to me. Otherwise it would never have happened for me. </p>

<p>I guess my point being that you should be aware it isn’t as easy as the thought occurring to mom and mom taking boy to the doctor. Many of the people I know with diagnoses, especially older kids and adults, really had to work hard to be heard and find the right resources. </p>

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<p>The OP says that her friend has switched the child’s schools trying to find a good fit, and tried special elimination diets. So friend already knows that her son has problems, and they have taken actions to address them.</p>

<p>I find it hard to believe that the friend could research and learn about the diets without running across the term “autism” or “Asperger’s” – and the OP also says that her friend is highly educated. So I think that the idea that the OP needs to suggest a diagnosis to the other mom is a bit patronizing – I’d tend to assume that is more likely that the child’s parents have wrestled with this issue for years and are very much aware that their son has problems.</p>

<p>It could be that rather than being in “denial” – the parents have made a conscious decision that they do not want their son “labeled” – or at least that they don’t want to share a concern about a specific diagnosis with others. So I share the belief that the OP could be risking a friendship by bringing up an issue that could already be a sore point with the mom. For the sake of the friendship it might be much better for the OP to listen sympathetically to her friends concerns, and ask positive, non-intrusive, open-ended questions when appropriate. I mean questions like, “what do you think?” and “how do you feel when that happens?” – not “what’s wrong with your kid?” or “what are you going to do about your kid?” If the friend opens up there might be an opportunity to ask the key question: “would you like my help?” – which would then create a potential opening to discuss things further. </p>

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<p>Ema- great post. Thank you.</p>

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<p>I think it has been generally agreed upon that it would be unwise for anyone to tell another mother that their child has autism, particularly since that person is not qualified to do so. I’m thinking in general the question is how or even if to steer this person towards some professional help.</p>

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<p>Ema, I think you have taught me more about Aspergers than any other source I’ve come across. You are so very generous to open yourself up to the CC community like that in order for us to gain not only understanding, but compassion.</p>

<p>And how awesome that the road to your diagnosis was in part made possible by someone on CC!</p>