JessReplanted Posted August 18, 2017 Share Posted August 18, 2017 We officially have a diagnosis. It has been a very difficult week. If you have traveled this road, were there certain resources that were very helpful or encouraging when you first got the diagnosis? I have already read Aspergirls. Thanks! Quote Link to comment Share on other sites More sharing options...
Lawyer&Mom Posted August 18, 2017 Share Posted August 18, 2017 I thought Nerdy, Shy, and Socially Inappropriate by Cynthia Kim really captured my experience growing up autistic and female. I read it as an adult looking back on my life, but I think it would also be helpful for someone raising an autistic girl. (I prefer the term autistic to Aspergers or high functioning autism, but we are talking about the same thing.) 1 Quote Link to comment Share on other sites More sharing options...
Maus Posted August 18, 2017 Share Posted August 18, 2017 What type are you looking for? There are first person, get inside a person with autism's head type. I liked "The Reason I Jump." I liked Temple Grandin's book, too. There are the technical description types. Anything by Tony Atwood is good. I found "Asperger's and Girls" very helpful. And my favorite written to kids type is "The Survival Guide for Kids with Autism Spectrum Disorders." I also liked "The Asperkid's (Secret) Book of Social Rules." The author, Jennifer Cook O'Toole, has Asperger's and is raising her kids with Asperger's, so it's both the insiders type and to kids type. 2 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted August 18, 2017 Share Posted August 18, 2017 I take dudeling to a ND who specializes in these types of disorders. It's been really helpful. I got dh onboard when one of his clients works with coordinating services for aspies said the kids who have one as part of their support network do better. we're in a new stage as adolescence can exacerbate the anxiety. we're also starting to see a ped. neurologist. (she said it's very common at this age to have more struggles as hormones kick-in.) 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted August 18, 2017 Share Posted August 18, 2017 You may want to cross post on Learning Challenges if you haven't already. 1 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted August 18, 2017 Share Posted August 18, 2017 A forthcoming book that looks great is called Teaching Pre-Employment Skills to 14-17 Year Olds by Joanne Lara and Susan Osborne. One of the biggest challenges even among those who are intellectually gifted is landing and keeping a job. The unemployment rate is around 80% :( It's not too early to start working on those skills. 4 Quote Link to comment Share on other sites More sharing options...
Janeway Posted August 18, 2017 Share Posted August 18, 2017 Aspergersexperts would be my all time favorite. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 19, 2017 Share Posted August 19, 2017 This book was by far the most helpful thing for me. I also took some comfort in watching Max on the show Parenthood, if only because when my son was insisting on wearing the same hooded sweatshirt every single day, even in 100 degree weather, I could tell myself, "at least it isn't a cape". 1 Quote Link to comment Share on other sites More sharing options...
WoolC Posted August 19, 2017 Share Posted August 19, 2017 Aspergers Experts and Uniquely Human by Barry Prizant are my favorites. I'm sorry it has been a rough week! I remember the feeling clearly when we got our diagnosis; I promise it gets better. For me, it helps to not focus so much on the autism/aspergers label and general books about it as to take a specific issue my ds is currently struggling with and tackle it with specific resources. 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 19, 2017 Share Posted August 19, 2017 Aspergers Experts and Uniquely Human by Barry Prizant are my favorites. I'm sorry it has been a rough week! I remember the feeling clearly when we got our diagnosis; I promise it gets better. For me, it helps to not focus so much on the autism/aspergers label and general books about it as to take a specific issue my ds is currently struggling with and tackle it with specific resources. To piggyback on this, it can be really helpful to get a clear picture about autism as a whole (big picture), then drill down to specific things for your child. I try to go back to the big picture view as my son ages and changes to be sure I'm not "missing" the significance of some things. Other times, it's nice to just focus on a specific issue. I encourage you to visit the Learning Challenges board. It's very helpful. If you can meet with a group IRL, that can be helpful too, assuming the group has an overall positive tone (they are supportive and will really understand the hard stuff, but they will also help you keep plugging away at life). If a group makes you feel like you are a carrying a lead balloon, that's not good! I find that being able to hear what other kids with autism are like is really helpful. Not in a comparison way (they are all so different), but in a way where you are looking for clues to your own kid. Sometimes kids on the spectrum present very differently in capabilities, but still actually struggle in some ways that stem from the same root cause. It's really helpful to be open to the possibility of similarities and to avoid the trap of "my kid is too _______ for that to be a strength or weakness." It's amazing the things I didn't think my son did when I just read about them, but then when I'm talking to someone who puts a different spin on a behavior, habit, way of processing things, I realize it's sometimes my understanding about the range of presentations of that particular trait that is off. Other times, I think something is such a big deal, and then I find out it's really not. It works both ways. 3 Quote Link to comment Share on other sites More sharing options...
WoolC Posted August 19, 2017 Share Posted August 19, 2017 To piggyback on this, it can be really helpful to get a clear picture about autism as a whole (big picture), then drill down to specific things for your child. I try to go back to the big picture view as my son ages and changes to be sure I'm not "missing" the significance of some things. Other times, it's nice to just focus on a specific issue. I encourage you to visit the Learning Challenges board. It's very helpful. If you can meet with a group IRL, that can be helpful too, assuming the group has an overall positive tone (they are supportive and will really understand the hard stuff, but they will also help you keep plugging away at life). If a group makes you feel like you are a carrying a lead balloon, that's not good! I find that being able to hear what other kids with autism are like is really helpful. Not in a comparison way (they are all so different), but in a way where you are looking for clues to your own kid. Sometimes kids on the spectrum present very differently in capabilities, but still actually struggle in some ways that stem from the same root cause. It's really helpful to be open to the possibility of similarities and to avoid the trap of "my kid is too _______ for that to be a strength or weakness." It's amazing the things I didn't think my son did when I just read about them, but then when I'm talking to someone who puts a different spin on a behavior, habit, way of processing things, I realize it's sometimes my understanding about the range of presentations of that particular trait that is off. Other times, I think something is such a big deal, and then I find out it's really not. It works both ways. Oh, I definitely agree with all of this. I personally have a tendency to research and obsess over things so when we got our dx I read everything autism I could find...to the point of overload. At times, I think I lost sight of the fact that he was still my same son; everything didn't change because of this new label. For my sanity, it helps to take a step back and say, how can I help my son with a specific challenge. But, certainly don't neglect reading a couple of good overview books. Just don't feel like you have to live there, iykwim. 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 19, 2017 Share Posted August 19, 2017 Oh, I definitely agree with all of this. I personally have a tendency to research and obsess over things so when we got our dx I read everything autism I could find...to the point of overload. At times, I think I lost sight of the fact that he was still my same son; everything didn't change because of this new label. For my sanity, it helps to take a step back and say, how can I help my son with a specific challenge. But, certainly don't neglect reading a couple of good overview books. Just don't feel like you have to live there, iykwim. I hope I didn't come across as contradicting--I was trying to add to, not dispute. I was hoping piggybacking was a good transition word, lol! Maybe not so much. I really meant to just add more perspective on why I go between both views for the OP. I totally agree with your focus as well. I find both kinds of reading up to be helpful. 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 19, 2017 Share Posted August 19, 2017 Teaching Your Child with Love and Skill: A Guide for Parents and Other Educators of Children with Autism, including Moderate to Severe Autism I savored this book, reading small bits at a time and trying to digest. I found it helped connect dots for me and explain things I had seen but didn't understand. Gentle, kind, not ABA, not therapy. Just what it means to have loving, patient interaction with autism. Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism) Ugly nitty gritties that everyone needs, sometimes. I think I came to Prizant late in the journey, because he seemed terribly obvious. I couldn't force myself to read it, just skimmed. But, depending on where you are in the journey, it might be really lightning bolt. Personally, I think encouraging would be over-rated at this stage. Best thing I ever read about autism was not to take up drinking. I kid you not. And the person's point was, it's gonna suck and it's gonna have some (too many) hard days, and if you solve your problems and how you feel about it certain ways, that could end up happening a lot. So apparently the stats are high on addictions in the autism mom community, that it's sort of a closet secret thing. And it's acknowledging, no matter what those stats are, that it's that bad, that it's that hard, that it's that overwhelming, and that if you feel the need to do some things to support yourself and keep yourself stable, it's a good thing. Like see a counselor for *yourself* for stress or hire workers so you get a break. I have a dear SIL who takes my ds out each week on outings. She's total gold to me. If you've got someone who will do that for your kid, let them and bless them and thank them. 2 Quote Link to comment Share on other sites More sharing options...
JessReplanted Posted August 19, 2017 Author Share Posted August 19, 2017 Aspergersexperts would be my all time favorite. I was looking at this site last night and could not decide if it was really great info, or if they were capitalizing on people (like me) who are desperate for info. Do you pay the $20 monthly fee? And if so, do you feel that it is worth it? Quote Link to comment Share on other sites More sharing options...
JessReplanted Posted August 19, 2017 Author Share Posted August 19, 2017 Teaching Your Child with Love and Skill: A Guide for Parents and Other Educators of Children with Autism, including Moderate to Severe Autism I savored this book, reading small bits at a time and trying to digest. I found it helped connect dots for me and explain things I had seen but didn't understand. Gentle, kind, not ABA, not therapy. Just what it means to have loving, patient interaction with autism. Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism) Ugly nitty gritties that everyone needs, sometimes. I think I came to Prizant late in the journey, because he seemed terribly obvious. I couldn't force myself to read it, just skimmed. But, depending on where you are in the journey, it might be really lightning bolt. Personally, I think encouraging would be over-rated at this stage. Best thing I ever read about autism was not to take up drinking. I kid you not. :smilielol5: I'm dying. Thank you for your honesty. It has been a really hard week. We waited for a long time for this appointment, and I suspected the diagnosis we received. But I never expected it to hit us this hard. And the person's point was, it's gonna suck and it's gonna have some (too many) hard days, and if you solve your problems and how you feel about it certain ways, that could end up happening a lot. So apparently the stats are high on addictions in the autism mom community, that it's sort of a closet secret thing. And it's acknowledging, no matter what those stats are, that it's that bad, that it's that hard, that it's that overwhelming, and that if you feel the need to do some things to support yourself and keep yourself stable, it's a good thing. Like see a counselor for *yourself* for stress or hire workers so you get a break. This makes sense, thanks. I have a dear SIL who takes my ds out each week on outings. She's total gold to me. If you've got someone who will do that for your kid, let them and bless them and thank them. What a blessing! My initial thought is that my dd is not 'bad enough' to need this. But I have no real perspective on what "bad enough" is because it is just what we have always lived with. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 19, 2017 Share Posted August 19, 2017 I think you could wait on anything expensive, especially recurring subscriptions. The one thing I've found really useful to put money into is Social Thinking workshops and getting trained in things. But to pay a site $$, I wouldn't do that, just me. Besides, you're in the throws of a new thing. Don't make any major decisions. It will be come obvious over time whether you can make do without that site or not. Besides, you can always ask questions on LC for free. :) 3 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 19, 2017 Share Posted August 19, 2017 Hmm, bad enough, not bad enough, I don't know. The Social Thinking.com site has social communication profiles. If you actually want to be precise, move on from the stupid DSM and look at the profiles. They'll show you expected outcomes, recommended treatment approaches, etc. For my ds, his profile is one of living independently but needing assistance to solve problems. It fits with what we see in him, and it has only been obvious data wise with more testing, testing we had AFTER his initial diagnosis. You're going through grief. Take your time and grieve and grieve all the way. You don't have to pretend it's not a grief or that you don't have the right to grieve. And then, every time something else becomes apparent on my ds, it's ANOTHER grief, another layer of grief. If you want something positive, you can google for the Welcome to Holland poem. It's very true. 2 Quote Link to comment Share on other sites More sharing options...
JessReplanted Posted August 19, 2017 Author Share Posted August 19, 2017 Hmm, bad enough, not bad enough, I don't know. The Social Thinking.com site has social communication profiles. If you actually want to be precise, move on from the stupid DSM and look at the profiles. They'll show you expected outcomes, recommended treatment approaches, etc. For my ds, his profile is one of living independently but needing assistance to solve problems. It fits with what we see in him, and it has only been obvious data wise with more testing, testing we had AFTER his initial diagnosis. You're going through grief. Take your time and grieve and grieve all the way. You don't have to pretend it's not a grief or that you don't have the right to grieve. So true. Thank you. And then, every time something else becomes apparent on my ds, it's ANOTHER grief, another layer of grief. If you want something positive, you can google for the Welcome to Holland poem. It's very true. Quote Link to comment Share on other sites More sharing options...
Lawyer&Mom Posted August 19, 2017 Share Posted August 19, 2017 https://www.socialthinking.com/Articles?name=Social%20Thinking%20Social%20Communication%20Profile Here is the link for the Social Thinking profiles. I think this is truly brilliant stuff. I identify strongly with the Weak Interactive Social Communicator profile. I think it is the best summary of my challenges I've ever read. I hope there is a profile that you think describes your child, whichever profile it might be, and that you are able to find good insights! 1 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted August 19, 2017 Share Posted August 19, 2017 If you want something positive, you can google for the Welcome to Holland poem. It's very true. YMMV. I personally LOATHE that poem. Because for many of us, we're not in Holland or some other unexpected-but-still-lovely place. We're stranded in Soviet-era Siberia where things truly DO s*ck. Sure, we can make the best of where we are. But it ticks me off no end when people try to sugar-coat all the parts of the disability (or in my child's case disabilities plural) that are legitimately awful. 2 Quote Link to comment Share on other sites More sharing options...
WoolC Posted August 19, 2017 Share Posted August 19, 2017 I hope I didn't come across as contradicting--I was trying to add to, not dispute. I was hoping piggybacking was a good transition word, lol! Maybe not so much. I really meant to just add more perspective on why I go between both views for the OP. I totally agree with your focus as well. I find both kinds of reading up to be helpful. Not at all! Just wanted to clarify that I do agree that the general view is helpful! I was kind of picking up on the idea that the OP was having a hard time with this and wanted to say, it's ok not to dive into learning everything about aspergers all at once, because I remember the feeling. I probably didn't communicate very clearly, sorry! I definitely agree with you here. 😊 2 Quote Link to comment Share on other sites More sharing options...
WoolC Posted August 19, 2017 Share Posted August 19, 2017 I was looking at this site last night and could not decide if it was really great info, or if they were capitalizing on people (like me) who are desperate for info. Do you pay the $20 monthly fee? And if so, do you feel that it is worth it? I don't pay a monthly fee for this. There are some free videos on the website I think that will get you started with the concepts. I did the Getting Out of Defense Mode course when it was offered at a big discount. Also, just following them on Facebook will give you lots of articles and ideas about approaching different situations with your child. 2 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 19, 2017 Share Posted August 19, 2017 Crimson, absolutely I can agree with your frustration. Like any book that plays up autism right now, not gonna be on my fav list. It ain't romantic. Way too much hurt and stress and problems to be open to any romantic view of it. The one thing I identify with in the Welcome to Holland poem, and the reason I mention it, is that observation that it's a new place, with new friends. That for me has been very true. Like if the op is feeling LONELY or isolated, she's going to find over time that she has new people to hang with that she never would have met or corresponded with otherwise. The internet helps with that too, a lot. I'm very comforted by the love I find myself surrounded with in the autism community, both with my online friends and in real life. It's the part I hadn't expected. 2 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 19, 2017 Share Posted August 19, 2017 (edited) I don't pay a monthly fee for this. There are some free videos on the website I think that will get you started with the concepts. I did the Getting Out of Defense Mode course when it was offered at a big discount. Also, just following them on Facebook will give you lots of articles and ideas about approaching different situations with your child. What is the name for their thing on FB? There's another one, Autism Discussion Page, that posts things, usually at least once a day, on FB. The guy has written a few books, and they usually generate discussion. Some of them you're like wow, that was really basic, but I stay on just because sometimes it's nice to have the affirmation, like wow I'm NOT crazy, other people see it this way too, my take was on track, you're doing the right thing, keep going it... There are other groups like that. Like I'm so not into the bio path for autism. We already eat a certain way and I'm not interested. But TACA (which I understand is very, very controversial and very into bio and stuff) has a really nice FB feed! Even if you're not into them, their FB feed typically has a really nice, encouraging sort of don't know what they're called (things with quotes, that kind of thing) once a day or every other day. And when you're needing to feel a little more empowered or confident, they're a nice read. If anyone has other autism-related FB feeds that are really good, I'd be interested. :) Edited August 19, 2017 by OhElizabeth 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 19, 2017 Share Posted August 19, 2017 ... it's ok not to dive into learning everything about aspergers all at once... This is a total rabbit trail, but I found some of the things in the books made more sense once I actually had some time with a professional and saw things being done. Some of it is hard to capture into words, and you can read books out the wazoo. My time with the behaviorist is time really well spent. Even stuff like that Verbal Behavior Approach makes a LOT more sense after you see someone doing it a bit. You connect the dots. I also find time spend with ASD2-3 is really worthwhile for me. And you can say oh well my kid is only ASD1, he's not like them. But my kid IS, it's just that it's so subtle it's really easy to miss. People who deal with a lot of autism don't miss it, but I miss it. So when I hang with ASD2-3 and see the behaviors, then I realize THATS' why he's doing xyz. I'm like Kbutton, having really moved out of the "oh he's gifted and really high functioning and is going to normalize with a bit of help and isn't going to have those holes" and into the "Oh my lands I wish someone would stop patting him on the head and saying he's gifted and amazing and acknowledge the deficits ARE THERE!!!" Like my ds has a 99th percentile vocabulary and scripts. So people talk with him and ASSUME he has language and don't realize where he's scripting. They don't realize he watches tv shows over and over and memorizes them. So his narration wasn't a narration, cuz he can't narrate. Yes Matilda, we've got work to do. But because he's gifted and got these strengths, it's easy to miss the holes. Sigh. 1 Quote Link to comment Share on other sites More sharing options...
WoolC Posted August 19, 2017 Share Posted August 19, 2017 What is the name for their thing on FB? There's another one, Autism Discussion Page, that posts things, usually at least once a day, on FB. The guy has written a few books, and they usually generate discussion. Some of them you're like wow, that was really basic, but I stay on just because sometimes it's nice to have the affirmation, like wow I'm NOT crazy, other people see it this way too, my take was on track, you're doing the right thing, keep going it... There are other groups like that. Like I'm so not into the bio path for autism. We already eat a certain way and I'm not interested. But TACA (which I understand is very, very controversial and very into bio and stuff) has a really nice FB feed! Even if you're not into them, their FB feed typically has a really nice, encouraging sort of don't know what they're called (things with quotes, that kind of thing) once a day or every other day. And when you're needing to feel a little more empowered or confident, they're a nice read. If anyone has other autism-related FB feeds that are really good, I'd be interested. :) The page is Asperger Expert. I follow the Autism Discussion Page too and have found it helpful. 2 Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted August 21, 2017 Share Posted August 21, 2017 If anyone has other autism-related FB feeds that are really good, I'd be interested. :) Autism Research Institute Autism Science Foundation Interactive Autism Network 2 Quote Link to comment Share on other sites More sharing options...
nixpix5 Posted August 21, 2017 Share Posted August 21, 2017 (edited) This book was by far the most helpful thing for me. I also took some comfort in watching Max on the show Parenthood, if only because when my son was insisting on wearing the same hooded sweatshirt every single day, even in 100 degree weather, I could tell myself, "at least it isn't a cape". Haha! That is so great! My guy on the spectrum had these rainbow beach pants that my DH called his clown pants secretly. They were cute at one point but not for the every day he wanted to wear them with everything. His pre-k teacher even inquired as to why he wore them so much. I told her she was lucky he chose anything else during the week. I was thrilled when he wore a hole in them (and he just won't wear anything with holes). :) Edited August 21, 2017 by nixpix5 Quote Link to comment Share on other sites More sharing options...
Guest Posted August 21, 2017 Share Posted August 21, 2017 We officially have a diagnosis. It has been a very difficult week. If you have traveled this road, were there certain resources that were very helpful or encouraging when you first got the diagnosis? I have already read Aspergirls. Thanks! :grouphug: I have two kids with ASD diagnoses and a third who might also be on the spectrum. All three are gifted as well, which adds its own layers of challenge. I grieved the first diagnosis... in some ways I still am. My son is a lovely human being, but I grieve my hopes that the limitations which make interfacing with the world hard for him would be things he might outgrow or overcome. ....but he won't. These are things, like his left-handedness, which are hard-wired in for him... only deeper, they are part of who he is. ...and it isn't going to get magically easier for him. The second diagnosis was easier because my daughter was so relieved by it. She hadn't been able to articulate her awareness of how differently she experiences and processes the world... and learning the whys behind her differences was incredibly validating for her. ...but I still grieve. I can't make this easier for them, I can't even understand the challenges sometimes. ...and my work as a mother is, frankly, much, much harder and more heartbreaking... and I am, some days, crushed by the guilt and fears that I haven't done enough or done the right things. I do love my children as who they are, and recognize that HFA is an intrinsic part of the people they are... and I do not want to change them... but I wish it didn't have to be so hard for them... or for me. I have yet to find a book or website which is really helpful, but one of our local autism clinics has some parent education/support classes which have been incredibly helpful. :grouphug: :grouphug: I wish I had more to offer. ...but there is so much we don't know about how to best support high functioning spectrum kids... especially how to help them launch into adulthood. Most of the research $ and resources are going into early intervention... and my kids weren't, and wouldn't have been, diagnosed as young kids... their giftedness masked their challenges until the pre-teen/early teen years. ...and had they been, the interventions available would not have been helpful... Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 21, 2017 Share Posted August 21, 2017 Autism Research Institute Autism Science Foundation Interactive Autism Network Ooo, those are exceptional, thanks!!! And I feel silly that I never thought to look up ARI on FB. :) Quote Link to comment Share on other sites More sharing options...
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