<p>I didn’t think OP meant she and her DH could diagnose this, nor that they would say anything harsh. About labels- I resisted labels for D2, still don’t completely agree with some, for some reasons I think are defensible. But we got her help. I contrast that with my SIL, who’s afraid of labels to the extent she’s had had my nephew on Ritalin for years, from the pediatrician, no specialist testing or counseling, ever. My brother talks about the son’s issues, I’m supportive. I mention testing, how a good counselor helped D2. Goes nowhere. The kid hasn’t received help. </p>
<p>I think you guys are an amazing resource and I have bookmarked several posts for continuing reference. Special shouts out to Ema and Fang. </p>
<p>I got: (1) don’t use the A word or attempt any diagnosis, (2) be responsive and supportive rather than intrusive, (3) follow up on my friend’s cues–talk about it when she brings it up, gently remind her of stuff she has said before, maybe ask about her fears/feelings/concerns, (4) be aware that simply referring someone to the school/doctor may not achieve anything–that they need a real pro, (5) that there is no pill or surgery or “fix” but there is benefit to having a framework for thinking about it and lessons like EF/life coaches that could be helpful (I knew the first part of that one and was hoping there was the latter) and (6) realize that there are still some things that people keep private or don’t share even if they aren’t in denial. Yes? </p>
<p>I will keep reading if you keep writing! </p>
<p>You are kind to want to help your friend and her son.</p>
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<p>Perhaps also consider whether your friend’s actions appear to be trying to “cure” the kid, versus trying to find a way for him to make the best use of his talents while minimizing the limitations of his social awkwardness. If they are (futilely) focusing on the former, they may not be doing enough of the latter.</p>
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<p>Being highly educated doesn’t necessarily mean the parents concerned aren’t in deep denial for a variety of reasons. </p>
<p>One older friend who turned out to have been diagnosed with ADHD with serious EF issues a few years ago had highly educated parents. One parent was a highly regarded academic in his field with graduate degrees from elite European & American universities and another was a schoolteacher with a Masters degree. </p>
<p>From talking with his parents and his family along with his own recollections, it seems many teachers, extended family, and family friends tried to alert his parents to consider getting him tested from a young age. </p>
<p>However, his parents stubbornly refused and were convinced it was a curable issue with a series of supposed “cures” which were little more than modern versions of snake oil or diets for which there’s little seeming relation such as being placed on a weird daily diet for a period of liver, fish oil, and leeks for a period*. :(</p>
<p>He’s now trying to come to terms with it and we friends are trying our best to help him as much as our limited knowledge/experience and time/commitments permit. It’s much more difficult for him not only because he’s approaching his 40s when he was finally diagnosed, but also because some symptoms were such that it played a critical role in his permanently burning bridges with many folks…including educators, friends, and even some members of his own family. </p>
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<li>That was one of many weird faddish-like diets his parents put him on from childhood till he went off to college to deal with “his idiosyncrasies”.<br></li>
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<p>I’m sympathetic to your friend’s parents. If he is in his 40s now, his parents would have been worrying about a diagnosis for him 25-35 years ago. There was not the awareness of EF problems then that there is now. Even ADHD was not as recognized then as it is now. He could have been seen by mental health professionals who assured his parents that he was fine, just high spirited. Or, which was and is very common, mental health professionals could have told the parents that it was their problem, because of their inferior parenting, and nothing to do with their son.</p>
<p>If he had been diagnosed with EF problems 30 years ago (was anyone diagnosed with EF problems 30 years ago?) there wasn’t a lot that could have been done. There’s not a lot to be done now, in fact. </p>
<p>Your friend is wrong to delay getting help for her son. A truly close friend will tell you when you’re wrong-- I only have one friend I’m that close to, by the way.</p>
<p>I know from my own experience of a son on the spectrum that denial is powerful, and that there’s no point in stripping it away unless you have something better to offer. Which you do. Intervention does help, and it also helps to understand that being on the spectrum is not a mark of shame-- the child did nothing to deserve this. This is a functional disorder and the family should be leaping up and down to do everything they can to help him maximize his potential. </p>
<p>As a practical point, I agree with the suggestions that you avoid diagnostic language-- just point out that he’s having trouble with x and y, and that’s important to get him evaluated so they and the school will have the information in order to meet his needs better. He gets one childhood, neuroplasticity diminishes with time, and (not that I would say this) it is self-protective and misguided for his parents to stick their heads in the sand about this so they don’t have to face the fact that it hurts. It’s not his fault, it’s not their fault, shame should not be part of this equation. (Easier said than done, I know.)</p>
<p>I spent my spectrum kid’s entire childhood focusing on social interaction-- had a steady group of kids over every Friday for fifteen years. I wish I had enrolled him in a church youth group-- often a smaller group setting with tolerant kids. That seemed to me the most important part of a good life and he craved it-- just didn’t know how to go about it that well. Anyway, he’s now a college student with an extremely busy social life-- still on the spectrum, but his skills and confidence have increased enormously with practice. </p>
<p>I am sorry the OP is in this position. It may be that the most carefully prepared intervention will have no effect. If so, all she can do is help the child while he’s visiting. I found with my own kid that he didn’t do tactful inference (he’s actually pretty good at it now). I had to clearly state what was expected in a given situation, teach things like handshakes and greetings. Other kids, if they are reasonably nice kids, can be trusted to provide some wonderfully direct and immediate feedback. Best of luck to OP-- it’s very kind to be worried about this boy and his family.</p>
<p>30 years ago I worked for a woman whose son was considered “hyperactive” and the only solution offered to her at that time was diet. Mainly she tried to keep him off sugar and caffeine. </p>
<p>TempeMom- looking back at your original post brought out another issue besides the child- his father. You mentioned that the mother may be receptive to further evaluation, but not the father.
“Her husband is an immigrant (programmer) and even when she seems steeled every so often to come to terms with “something might be wrong” he is not.”</p>
<p>f the marriage is a more traditional one, with mom being more at home or being more involved with child care than dad, sometimes the mother sees the situation in a different way than dad does. For instance, the mother sees the child with playmates or hears from teachers at school during the day. If dad comes home from work and sees the child in the evening- then he generally sees that part of the child’s day. Also, kids can behave differently with their mother than their dad sometimes.</p>
<p>The father comes from another country. There are cultural differences with regards to exceptional children. In some cultures this is considered to be negative- insinuating a bad family and even affecting marriage prospects for other family members. Not all countries embrace the idea of mainstreaming, or equal access to education, and in his country, exceptional children may be sent to other schools or no school. There is concern over “labels” in our country, but it could be worse where he comes from, and he may have some cultural fears. Dad may object to the diagnosis because he is not aware of what help is possible.</p>
<p>Dad could also be on the spectrum. It’s a huge leap to assume this for either the son or father- since we can’t be “diagnosing” here, but there is a genetic component to the spectrum with family members possibly also having some traits. Dad may see his son as much like him, and since he turned out OK, assumes the son will too.</p>
<p>Not sure what the answer to this is, but bringing up these ideas as possible barriers to getting the son evaluated. </p>
<p>TempeMom – Your concerns are valid. I would be willing to bet that this boy is on the spectrum. Unfortunately, If the word “autism” is on the mother’s radar screen, she is seeing it as a negative. What I wish people would understand is that having a name for what a child has is a positive. The name opens up so many options and strategies. The boy’s behavior won’t suddenly change because of a diagnosis. His behavior would, however, be easier to understand.</p>
<p>I would want these parents to see autism as a good thing, not a bad thing. It is a different way of thinking, of viewing the world. People with higher functioning autism have done remarkable things. There is no reason to be ashamed of autism. With the right support and understanding, people with autism have much to contribute. They have written books, composed music, and written computer programs. Even though communication with fellow workers may be difficult, many autistic people have a very strong work ethic and/or extreme focus on their jobs. Most autistic people are very honest and do not understand lying.</p>
<p>As a parent who was relieved to get a diagnosis of autism for a child, I have a hard time understanding why any parent wouldn’t want to know what was going on with a son or daughter. So, how best to get through to the mother?</p>
<p>Here’s a thought. Do you and she ever discuss books? Do you two together or with a group of friends ever sit by a pool or watch your children together? Could you pick up a copy of one of Temple Grandin’s books and just have it around to read when you’re spending time around her? Temple Grandin is autistic and is a college professor and designer of at least half of the cattle processing facilities in the country. She explains so well how she thinks in different ways from neurotypical people. Maybe you could ask your friend if she’s read any good books lately and hope that she’ll ask you the same question. Maybe you could explain that a parent of a child with autism (me) recommended your book to you and that you’ve found it fascinating. Maybe you could talk about how you are going to recommend it to someone you know with a child with autism (assuming you do know someone besides her) because it is so inspiring and exciting.</p>
<p>I don’t know whether she’ll flinch at the very mention of the word “autism” or whether she’ll think you’re scheming to talk to her about it. You would have to do a very un-autistic thing and sense whether the setting and her mood were right to bring up the subject.</p>
<p>Many people think Albert Einstein was on the spectrum. Temple Grandin thinks that Steve Jobs was probably on the spectrum. We will never know for sure whether they were or weren’t. What is important is that many people are recognizing that there are autistic people who are very highly intelligent and creative, and that being on the spectrum can be a good thing.</p>
<p>Best wishes to you.</p>
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<p>Oh, stop. Being unable to interpret social signals is a handicap. Lacking executive function is a huge handicap. No amount of happy talk is going to make that untrue. A parent who is told that their child is on the spectrum is being told, “Those traits you were hoping your kid was going to grow out of? He’s not going to grow out of them.” Presenting that as good news doesn’t make it good news.</p>
<p>If a kid is on the spectrum, it’s better for parents to know. It’s even better for the kid not to be on the spectrum. If you take your kid in to be diagnosed, you would rather hear, “This kid is not on the spectrum, it’s something else that we can fix” than “Your kid is on the autism spectrum.” </p>
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<p>The problem with his parents was the academic viewed this partially as a condition curable with weird sketchy cures and diets along with him being lazy/flaky and harshly berated him for it from childhood onward. </p>
<p>The schoolteacher wasn’t that harsh, but similarly felt it was an issue curable with those “cures” and weird diets. </p>
<p>Both refused to even consider any form of evaluations of any kind as they both didn’t feel his problems are rooted in a learning disability* and they both had deep distrust of the psychiatric field matching those of conspiracy theorists. </p>
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<li>My impression is part of this reaction is similar to the dynamic some parents of HS classmates had when they found some of their children were extraordinarily accomplished as students/careerwise as they were at their ages while having a hard time coming to terms that other children are struggling to be average/below average in those areas.<br></li>
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<p>If you ask a bunch of adults of this person’s age, who are now diagnosed with ADHD, you will hear story after story after story after story of them being told they were lazy and flaky, by teachers as well as parents. It’s too bad about the sketchy cures and diets, but there’s a reason why a well-known book aimed at adults newly diagnosed with ADHD is called You Mean I’m Not Lazy, Stupid or Crazy?! It’s because people with ADHD get called lazy a lot.</p>
<p>Cardinal Fang – I’m not trying to make happy talk at all. Perhaps I didn’t state my position well. Let me try again.</p>
<p>Since our son was very young, we have told him that he has some difficulties because of his autism. We have also told him that his autism gives him some strengths that other students don’t have. We have told him time and again that we would not have him any other way and that we love him just like he is. We tell him that we wish the world were more accepting and that we and others will help him understand the world so life is easier for him. Our extended families are also supportive in this way. As a result, he is not at all ashamed of being autistic. He tells people he has autism, which helps him. When people know, they are more understanding. Rather than being teased for being autistic, he has generally been supported by his classmates.</p>
<p>When we had our son tested, we wanted to hear a diagnosis of autism. We already thought he was autistic, and we were eager to find out what we could do to help our son. To have a label meant we could target our efforts better. We didn’t want to “fix” him. We didn’t want him to outgrow being autistic. We wanted to help him navigate the world.</p>
<p>Now, here’s a caveat. I don’t have a non-verbal son with troubling behaviors like hitting or wandering. My son also does not have executive functioning difficulties. He is obsessed with order and rules and can handle that part fine. My son is much like the boy described here – very bright, interesting, with academic strengths and weaknesses and social difficulties. The boy here sounds like someone for whom autism CAN be framed as a positive thing – a source of his strengths as well as his weaknesses. That is why I brought up “autism as a good thing”. I might not do that with every parent with a seemingly autistic child. I can’t, and won’t, generalize that for every child with autism, especially those who are lower functioning. </p>
<p>This boy is what he is. A diagnosis isn’t going to change that at all. I suspect that the parents are worried about stigma or that they have plenty of misconceptions about autism. Maybe they are worried that they “gave” it to him or that people will think bad things about their son if he has a diagnosis.</p>
<p>This is what I meant – not a denial of the real difficulties that parents with autistic children face.</p>
<p>Well I do have a son with executive function difficulties. And I don’t see one single thing that is good about that.</p>
<p>Cardinal Fang – I’m sorry. That must be an incredible struggle for you all. One of my non-autistic children has problems with executive function, and it is difficult. In some ways, this has been more difficult than the issues with my autistic child. Please know I would never minimize what you are going through. I was talking specifically about the son of the OP’s friend.</p>
<p>Oh, OK, then. </p>
<p>At first I didn’t realize that you meant that although in general autism is not a diagnosis a parent wants to hear, if the child is high-functioning and doesn’t have executive function difficulties, then autism can confer some advantages.</p>
<p>Although we had my son tested when he was younger, we did a big comprehensive test again in 7th grade. It was an enormous relief to all of us to have names for things. I’ll forever thank the Dr who explained to him in terms he could understand - he compared him to Michael Jordan, but then mentioned if a normal player scored 10 - 20 points in a game no one would think much of it, but for MJ to do that would not be indicative of his talent. I don’t really get the head in the sand thing, I think as parents we owe our children to give them tools to be as successful as possible.</p>
<p>There’s a saying within the autism community: “If you’ve met one person with autism, then you have met one person with autism.”</p>
<p>That is meant to convey the tremendous variance among the way autism presents in different individuals.</p>
<p>It is true that for many, the label is a relief: having a name to put to it, knowing that they are not alone – can be very comforting.be</p>
<p>But is that true for all? I think that for some, the label might seem depressing, upsetting, confining, or frightening. We can talk about educating the people (parents and child) about positives associated with the label --but that doesn’t prevent the parents from finding other information and interpreting it negatively. Is autism a positive characteristic that should be embraced? Or is it a devastating disease that unfortunately lacks an easy cure? That is a question that has caused deep philosophical divisions within the community of people impacted by autism – you probably can find opinions all over the spectrum. </p>
<p>The OP can give her friend information, but she can’t tell her friend - or her friend’s husband – or her friend’s child - how they should feel about the information. The problem is that she also cannot predict how the friend will react to well-meaning but unwanted advice. Right or wrong, the parents will tend to filter whatever information they receive through their pre-existing expectations or biases. They will hear what they want to hear, reject what they don’t want to hear. That’s human nature. </p>
<p>That is why I think that in the long run she can be a better friend – and potentially offer more help to the child – by continuing to being an open and supporting friend who listens well, rather than being the dispenser of unsolicited advice. The advice she gives may be 100% right-- but that doesn’t mean that the friend is going to listen to it or respond well. </p>
<p>Yes, in the discussions around the fact that Asperger’s was taken out of the DSM- this variation played a part, among other things. How one experiences the spectrum is not an absolute frame for the next.</p>
<p>But, is the issue here the friendship? Maybe, in that OP can’t support a friendship that is gone. But I think there are many cases where most of us would speak up on behalf of a child, even if it annoyed another- our actions or reactions depending on the circumstances. </p>
<p>No one has said report the family, most of us know we’re not qualified to diagnose. But when mine were young, I personally felt “it takes a village.” That can occur in many ways, still be gentle, respect the friend. (Not directed at any one poster.) </p>