Home > In Their Own Words > MIXED EMOTIONS: A Mother and Son Response to the DSM-5 Change

MIXED EMOTIONS: A Mother and Son Response to the DSM-5 Change

Editor’s note: In this blog, Wills and Monica share their feelings about the possibility that planned revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will cause him to “lose his diagnosis” of autism. As Autism Speaks Chief Science Officer Geri Dawson explained in a recent statement and webchat, preliminary reports may have overestimated the number of individuals who would lose or be denied a diagnosis under the proposed new definition of autism spectrum disorder (ASD). Autism Speaks is proactively working to determine how the new DSM will affect diagnoses and to ensure that no one affected by autism symptoms loses the services they need. Stayed tuned.  

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This is a guest blog post by author Monica Holloway, who wrote “Cowboy & Wills,” and her son Wills, a 14 year old on the spectrum. This post has 2 parts – first is Wills’ reaction to the DSM-5 changing, and then Monica’s reaction to Wills.

Wills and Monica
Wills and Monica

Wills writes…

(Monica’s note: Wills watches the evening news every night for current events, and we were watching together when this (the DSM-5) was announced as a possibility. As you can see, Wills has taken it as fact, even though we’ve talked to him about this. Wills is being mainstreamed in the Fall. This was in place long before Wills saw this newscast.)

I have been on the autism spectrum now for fourteen years. Ending a fourteen-year journey through such hardship, fear and compulsiveness seemed to be unheard of. To see that goal finally come into view is truly unbelievable. Little by little, I inched my way off the spectrum, overcoming so much fear and anxiety.

Now to possibly be considered “not autistic” simply over joys me.

Nearly ten years ago, I was diagnosed with autism. That marked the start of a ten year long marathon that might be coming to a close in the near future. When I saw Brian Williams say that “Aspergers might not be considered autism,” I jumped for joy along with everyone with Aspergers, I assume.

That announcement meant the world to me, and I will remember it for the rest of my life.

There are pros and cons involved in no longer being autistic. Like special needs schools. I am now too advanced for my special needs school. I will likely go to a different school in the fall. Another is, special needs services and counseling. But I think that these are helpful to anyone.

For the hundreds of thousands of people with Aspergers, we finally did it!

Monica’s writes…

As Wills’ mother, I find his take on the possibility of changing the DSM to not include Aspergers Syndrome (Wills’ diagnosis) incredibly heartfelt, as well as heartbreaking. Through endless conversations and therapy sessions, we felt that Wills was comfortable and accepting of his diagnosis. It’s painful (and yet understandable) to  see that he has been hoping to come off the autistic spectrum. He is vocal and positive about his autism, often speaking to younger groups of children about his experiences. We saw him confident in who he was.

Wills is fourteen years old. If this had come up when he was first diagnosed (we had him in therapy when he was eighteen months old), he would not have received the services that have been instrumental in his improvement.

As a young child, Wills was considered “high functioning,” but he still had many social, academic and personal issues that were debilitating. He was unable to stay in a classroom without a shadow, use a public restroom, interact with his peers, sit through any kind of school assembly, balance on a bicycle, hold a pencil or pen properly, sit in a restaurant —and the list goes on.

My worry is that children like Wills will no longer be eligible for the services he received—the very services that gave him a chance at living his life as a relaxed person, fully integrated into society.

I was surprised to see that Wills was so relieved to hear that he might not be “autistic” anymore, and that this was a great accomplishment to him. And in so many ways, it is an incredible accomplishment. He’s worked very hard, but I know other children and other families who have also worked just as hard without the same results. Who can say why some children improve while others continue to struggle? And that’s not to say that Wills no longer has issues. There is plenty to work on.

He continues in his social skills group, speech and language therapy, and sees an educational therapist to keep himself up to grade level. But these are not life-altering problems. His improvement is a miracle to me—a miracle that I want other families and children to experience.

My son is my heart, and I want him to be proud of himself whomever he turns out to be. If he is (or is not) considered diagnostically “autistic,” it’s irrelevant in terms of the way I see him, but it is obviously not irrelevant to the way he sees himself. I’m proud of Wills for writing about his true feelings. His happiness and self-esteem are critical, of course, to his leading a happy life- which is all we want for our child. There is, as I said before, work to be done.

Have you had these conversations with your children and family? Tell us what you think by leaving a comment and by sharing this post. 


  1. Garkis
    February 2, 2012 at 1:01 pm

    There’s actually nothing in the soon to be criteria that makes it likely that people who should have been diagnosed with Asperger’s won’t be considered ASD. If anything a few changes could make it clearer some people fit. The people most likely to be undiagnosed if there is such a thing shouldn’t have had a diagnosis in the first place. I suspect some doctor’s don’t pay sufficient attention to the requirement for clinically significant impairment.

    Autism is lifelong and pervasive, people grow and develop but if you are on the spectrum you can’t inch your way off it. Your brain remains your brain. You develop skills, you learn to cope etc… I spent a decade of my life thinking I could approach my own autism much like Data approaches being an android. Trying to outgrow my programming. It didn’t work and made me miserable.

    Please for the sake of your son don’t make the mistake of deciding he isn’t autistic. No matter how high functioning he will continue to struggle in ways that might not be obvious to you and if you stop taken autism into consideration he may not get the familial support he needs.

    I am 43. It was pretty normal in my day that once they had established you were not retarded, and you had had a bit of speech therapy, maybe learned to toss a ball around a bit for your parents to forget about autism. Somehow if you continued to consider the child autistic in the views of the people who gave that advice you would get more autistic. Your label was changed to residual and in my own case I wasn’t even 100 percent sure I had ever been diagnosed that (although I had memories of it being associated with me and hearing fights about it) until a doctor I had when I was 18 got my old charts and said that it said “residual autism” but it didn’t seem that residual to him and that the ways they looked at that had changed.

    I hope especially you will be careful if how your son sees himself seems harmed if he is not considered ASD. It took me until I was almost 30 to accept my autism and what that meant and be okay with who I was. No matter what they call an autistic person the day after all this they are the same person.

  2. Garkis
    February 2, 2012 at 1:04 pm

    Actually there doesn’t seem to be a away to edit a post the last paragraph should read if he is still considered ASD.

  3. February 2, 2012 at 2:38 pm

    Maybe I’m confused but after reading this post, I went back and read the press release here http://www.dsm5.org/Documents/12-03%20Autism%20Spectrum%20Disorders%20-%20DSM5.pdf . Unless I’m very confused, I don’t see that they are removing Asperger’s syndrome from the autism spectrum diagnosis. Rather, they are adding it as an ASD along with PDD-NOS and classic autism disorder. My understanding is that kids with Asperger’s will not lose services. Is it really being reported that they will no longer be diagnosed as having an autism spectrum disorder? Can someone please clear this up for me?

  4. Garkis
    February 2, 2012 at 5:06 pm

    There is a lot of fearmongering going on by a few groups and that has the medias attention. I chat a lot in a room for a people on the spectrum and some were supporting a petition against the changes without having gone through them. For people who don’t understand how the DSM works or how this process worked they can get afraid. Those fears are legitimate but they are being fueled by bad information and the mass media and some advocacy groups in my opinion.

    The changes are not that radical. It looks like less criteria but they really just collapsed the things that had always been considered core impairments. They use the word range a lot and I think anyone who is really afraid needs to read it carefully and look at how it is worded. Looking at the tab about severity is also good as that supports are needed even at level 1 is in there. The connection between functioning and support is made.

  5. Ilyse Levine-Kanji
    February 3, 2012 at 7:29 am

    Here’s an article about my family’s experience: http://commonhealth.wbur.org/2012/01/autism-definition/

  6. Garkis
    February 3, 2012 at 10:52 am

    I am really curious about those who feel it’s been narrowed what they felt is left out? The things they used to list individually have been collapsed but that was due to research that showed they always were occurring together. So the sections detailing those core and essential deficits (for diagnostic purposes) are shorter but the wording is still all basically there to cover the situations being described.

    Sensory is finally in there. That’s likely going to help parents and the people who work with autistic children (especially the non-verbal) consider reasons for behaviour, (pardon the u’s I am Canadian)

    If you look at Asperger’s (since the concern arises mostly for the population that has that diagnosis) take a look at the old criteria and the new ones side by side if you have to. While the criteria have been collapsed it means essentially the same. The way the language is it takes into account the range.

    Those concerned about the lack of reference to things like intelligence – the DSM structure contains within it methods to code for that. (the axis) Those references while helping the general public understand you could be autistic in some form and be smart. It was actually a bit harmful for people like myself who technically are autistic but “smarter” than they were able to measure. Even my own doctor’s sometimes wound up referring to me as Asperger’s so that other doctors they referred me too would not think I was retarded. I would up doing that myself for a short time until I realized that I was contributing to the problem by approaching it that way.

    The adult online community chats a fair but and Europe began using the term Autistic Spectrum Disorder so long ago now it is a bit lost in the mists of time. It quickly became the preferred term for many in the community as it succinctly in it’s very name conveys the notion of a range within that disorder.

    Also as I used to tell parent’s of newly diagnosed children in a chat room for both parents and those on the spectrum nothing had changed post diagnosis. The child was the same. Their needs and issues the same. The label had perhaps changed what was felt about the child rather radically, rather fast. The same will be true for those (if there actually are any) that truly no longer fit the new criteria. I would suspect if there are any individuals that this is the case for (since first estimates appear to have been wildly over-estimated)

    I honestly think once people are used to it (I had a head start as my degree is in psychology and my friend with a more current one in cognitive neuroscience have been discussing and obsessing a wee bit about the changes from the start. If you can find the first draft you can actually see what an improvement this one is as in the first one it read like not a single person considered autistic would actually be autistic due to how the part about social activity was worded.

    Again back to Wills as I have real concerns about him based on my own experience coming to terms with my autism. I doubt that he won’t be considered that but I hope more work can go into accepting his autism. I never spoke much about the ways I rejected it but I know I felt too defective for my parent’s too love. When Star Trek the Next Generation came out Data’s desire to outgrow his programming to be more human (yep I didn’t even feel human) seemed the perfect analogy and I emulated Data. This was actually good in some ways as illustrated many aspects of my struggle but the notion that I could outgrow my autistic programming was of course deeply flawed and caused me a lot of pain and frustration for a long time.

    I grow, I change, I learn new skills to cope. It goes back and forth a lot depending on my stress but I will always be autistic no matter what word they will be using for it by the end of my lifetime. That’s what a pervasive developmental disorder means.

  7. Leslie Joscelyn
    February 3, 2012 at 1:36 pm

    AMEN Wills and Monica. Very well put. Congratulations to you Wills, and kudos to you Mom for being all that you can be through the joys and sorrows of having a child diagnosed with Autism. My son was also diagnosed with high-functioning Autism when he was about 18-months old. I put him through Early Intervention, and it definitely worked!! I am so proud of my now almost 5 year old son who went from completely non-verbal to a future talk show host!!
    Well done you two and keep up the hard work. Keep those boxing gloves on and fight the fight always and forever!!

  8. Dawn K.
    February 3, 2012 at 1:42 pm

    I have 16 year old twins, both with aspergers. Our struggle has been life long, our diagnossis only five years old. We are at a pivotal time in our lives. Starting the transition to college. I am so frightened that my gifted, high functioning children are going to fall through the cracks with the new definition. This could make or break their future. Without continued help my boys may not have the opportunity to attend and succeed at a university. Like Wills, they are anxious to lose the autism stigma. But I know that without the right help, and continued help, that my boy’s dream of working for NASA will be just that, a dream. What I find most frustrating is my children’s future and well being is in the hands of people that don’t know us nor seem to care about us.

  9. February 3, 2012 at 2:19 pm

    Garkis,

    As the mother of a 17-yr-old with HF autism, your posts brought tears to my eyes. I agree with you 100%. No one ever said that the changes meant anyone who’s impaired and in need of educational (and other) services would be denied them. However, I have found that people, in general, fear change of any kind.

    Our son has come a very, very long way these many years. Its a long road, and I daresay, that there are hundreds of people, who have been instrumental in bringing him this far. When I read your most articulate posts, I do not hear any hint of social difficulty, anxiety, wacky thinking, associated with an ASD, I am not saying that its not there, but simply, that in your writing, it doesn’t show up. My son is also a brilliant musician and when he performs, again, no would never ever know. This disorder is still so often thoroughly misunderstood. Its when one spends TIME with a person with an ASD, (unless, he’s obviously on the lower end of the spectrum), where one begins to see the daily and intense struggles that a person on the spectrum has.

    One of them is hi-lighted by the lovely letter written by Wills. Wills heard a news story and took what he heard at “face value.” (they are removing Aspergers from the DSM-V, therefore I no longer have it! hooray!) :( He has trouble with inference and the subtleties of language. His world is black and white. If he can see it, its real and if he can’t, its not. If its part of his intrinsic belief system, its the WAY IT IS… (to use a metaphor, something that’s difficult for many HFASD to grasp) His world is FLAT… and there’s nothing anyone can say or do to convince him otherwise, and on top of that, he’s outraged that you would hurt him, by trying to tell him its round. As you said, people with ASD, do improve and they adapt, but it never goes away completely. The brain is capable of amazing things, but its impossible to create something that’s not there in the first place. The wonderful thing about “aspies” is that they almost always have INCREDIBLE ABILITIES, in some areas, that are far better than us boring “neurotypicals.”

    I am so heartened however, at how well you are doing. We’ve always had high hopes for our son, but the things that other parents take for granted, are often elusive. However, sometimes, they show up later. There’s a reason its called “delayed.” There is no written manual; one size doesn’t fit all; we had to come up with our own.. Well, I need to get ready to pick him up for the weekend from his amazing therapeutic boarding school. We are indeed, incredibly blessed.

    My best,

    Laurel

  10. PhilS32767
    February 3, 2012 at 5:45 pm

    Wills and Monica both,
    I hope that as Wills grows into young adulthood, he gets to meet autistic people who are living their lives to the fullest and feel no need to “lose” the label or be ashamed of it. Your self-esteem should *not* be at all dependent upon being “normal” or not-autistic! The rest of the world has come to terms with other differences — religion, ethnicity, race, gender, sexual orientation — and it is in the process of coming to terms with differences in neurology as well. “Autistic” and “competent”, “autistic” and “well-adjusted”, “autistic” and “self-confident”, all can and do coexist — they are not by any means contradictions in terms.
    Seek out peers who live by those values — in organizations like ASAN, AutCom, and GRASP, at events like Autreat, in forward-looking local chapters of the ASA which have elected autistic adults into their governance, and in progressive regional organizations like AANE here in New England and AASCEND in San Francisco. Find and follow progressive blogs, listservs, and chat channels — the Autism Hub and the Autism Blogs Directory are good places to start.

  11. Garkis
    February 3, 2012 at 7:17 pm

    I write well, The computer is a great blessing both for communication and socialization. Years ago I wrote a series of articles on autism on a site as I feel those who can articulate actually have a duty to do so. Been trying to write more of them as I understand that part of the problem with autism is it is largely defined from the outside. I avoided autism speaks like the plague for years because people who actually have it were rarely referred to as part of the dialogue.

    This week with so much on the news about the changes I realized that however I feel about some aspects of Autism Speaks they have the resources for a very big conversation.

    Right now to be perfectly honest I am not doing so well. I have to move from the place I have lived for 14 years and all my routines and life are built around. The system in our area doesn’t do much for adults like me. When I am stressed I decompensate and this is stressful. I do find however staying on my computer helps and helping others helps.

    Something that worked for me as far as social difficulty as a teenager was structured social activity your son is a bit old to take it up now but for any parents of younger higher functioning people I highly recommend the cadet program. It’s so structured you know what to say in basically any situation but still provides a lot of time with your peers some of whom hopefully come to like you. Teaches useful lifeskills as well and instills confidence.

    Over the course of a fairly long life now (I am 43) I have improved in many ways. It’s all a bit shaky with all the change I am dealing with right now and lack of any useful help. I know I will be okay again though.

    I am like Wills in that I initially take things at face value. It drives me a bit crazy at times and makes me feel dumb. I often almost immediately realize that it wasn’t a literal statement. I know in my brain that humans actually are not being literal a shocking amount of the time. Still the default reaction is always literal. I read a lot and read fast so I can take in a lot of those weird things people say and memorize them but even so… It gets a bit frustrating.

    My rabbi guessed pretty quickly that I have autism despite having spent very little one on one time with me. I told him the other week (we had had little one on one time together) and are both new to the congregation and he just laughed and asked if I thought he hadn’t guessed. To be fair he is a psychologist so had a wee bit of an advantage but his reaction was reassuring to me so I was able to tell some people at lunch today as well and they were also very nice and reassuring.

    It took me a decade to actually get myself to go to temple though. There’s lots of fear and anxiety a lot of the time but you build a life that sometimes goes smoothly enough to minimize that a bit.

    Right now my intense struggle is that I am so stressed the only time I have any executive function at all is at my computer (maybe I borrow it’s) If I leave it not much gets accomplished and I wander around pretty aimlessly. I know this will pass as I have been this bad before but it feels like some special nightmare when it is happening.

    It’s interesting your son is a musician. I play the drums. I had possibly the worst day of my life yesterday in recent memory but the handy dart arrived and took me to band and I played drums actually better than usual. Music has structure and it’s a way of interacting with people in a way I think. You create something with them and they come to appreciate you as their drummer. If you are on facebook look up Friends of Music Society. I helped found that society and play in one of their ensembles and while the mandate is about mental illness we take all comers and my conductor has been very good about the times when the music and my sensory issues collide.

  12. Mandy
    February 4, 2012 at 8:42 am

    Don’t be surprised if a DSM-6 Task-Force is contemplating a new category to diagnose and treat those damn crazy, pesky parents of autistic children.

  13. Cristi Pennington
    February 4, 2012 at 10:44 am

    WOW! I have been receiving this email for years and never had a opinion that I thought was worth writing about until I saw this story. I am a mother of two amazing kids.. one without autism and one who was once diagnosed severely autisc. My son went from doing the normal baby actitivies to the next day he was another kid. I know that it I read what I just wrote one day good one day another child, I would be more than scepital!!
    What grabbed my attention was the DSM 5- I have been a college student and will graduate in May with an Associates with in emphis in Substance Abuse and Mental Health. I have HAD to study this diagnosic tool tiresly to be tested on it to receieve a great grade in each class. Im afarid for or future children who might never have a chance to even dream of becoming successful. MY son was diagnosed with severe autism at 1 1/2 yrs old with a functioning level of a 10 month old. I was my own advocate for my son to receive services, yes I have a husband of 14 yrs. but since he works nights (still) he did not see what I saw. I was alone. My son is now 8 yrs old and smarter than I am (HA HA)! He has great social skills but struggles in different areas as we all do in our own lives.
    Sign me up!!! If there is anything that I could do in this fight to help the future children, and the ones who are struggling right now, Im In.
    Thank You,

    Cristi Pennington

  14. Garkis
    February 4, 2012 at 12:49 pm

    I don’t know how many hours you spent studying it for an Associates but if you still think you understand it well enough to think these changes represent a threat to the future of your son I would suggest you take a higher level course on the DSM. Not saying that to be insulting by the way. But there are terms that you should have understood in those studies that you may not have if your studies were highly focused on the DSM as it applies to substance abuse. The basic workings are the same though but some of the terms that should be reassuring to you in the new definition don’t seem to be which suggests to me an unfamiliarity with some of those that apply to other areas. I could be wrong and I am not trying to be insulting but until your post my working assumption had been those that actually understand the DSM and the process should be the least alarmed.

    I didn’t mention it any earlier post but I have a first class degree in psychology. You may feel you have studied it tirelessly but we did two entire courses on the DSM itself and then sepecific courses on how it applied to both childhood disorders and other disorders. I understand it very well and more importantly I understand the process and the reasoning.

    I don’t know if you have actually taken a close reading of the new criteria side by side with whatever criteria your son was diagnosed with but most of the people I have encountered who have this as an actual fear are not looking closely at how the new criteria is worded. It specifically and multiple times uses the term range.

    Of course your son has improved a lot. Autism is a developmental delay. In the absence of severe intellectual impairment a lot of autistic people are indeed as you yourself put it “smarter than” their parents. That smartness is actually neurologically related to the deficits but if you are in interested in the hows and whys of that there are good articles on it.

    As for your son having great social skills I suggest you take a look at this phrase: (but may not become fully manifest until social demands exceed limited capacities) I would have been happier if they somehow managed to recognize demands in childhood go back and forth a bit. For myself my best time socially was around the age 9-11. My speech had normalized. I had some capabilities other kids didn’t that made me actually somewhat popular although to me all but a very few of the children were interchangeable still I would have seemed very social to some people observing.

    Something to be aware of though and which has been written about in great depth is that throughout childhood that gap may widen again where once again his capacity will exceed his demand. Around puberty the other kids once again became as mysterious as they had been when I had been forced to interact with them in kindergarten. I never to be honest really ever caught up again although I enjoyed university because the grades I got pretty much meant people would seek me out. Academic social demands didn’t really exceed my capacity as long as I stuck to the life of a nerd.

    So not wanting to be doom and gloom here and of course every person with autism is different the disorder is pervasive and developmental. There is no chance that someone diagnosed as severe at the age your son was should be at risk of losing anything here. There is nothing in there at all that having improved you suddenly are not on the autistic spectrum. One of the biggest challenges adults actually face is those who were fairly severe (If kindergarten had had most likely to awards mine would have been most likely to scuttle under the nearest table when presented with the horrors of play.) is that people somehow thing comparing the two well the autism must be gone. They just can’t make the connection between the child that was and the adult in front of them because although the adult will still struggle in all those same areas they have become adult struggles and different activities.

    A good clinician takes all that into account as it is by definition the part of the very category that the disorder falls under. So I suppose the most useful thing to me is rather than fight these changes which are in many ways an improvement is to ensure if any re-evaluation is necessary that the clinician (up here typically a neurodevelopmental psychologist but I don’t know how they do things in the US) is very good and if they don’t seem to take the development nature of the disorder into account get a second opinion.

  15. Cristi Pennington
    February 4, 2012 at 4:42 pm

    To Garkis: I don’t know you nor do I pretend to know the DSM from front to back, I have not worked tirelessly as you posted to completely understand anything. When I wrote this earlier I was speaking of an Associates for Counseling in substance abuse and that was just a part of me that I shared because I will be graduating in May. I have
    spent time studying lots of different disorders BUT the difference is that this is MY LIFE, my son!!! I did not NEED a doctors approval to know that my son was suffering from something that was far beyond my understanding!! Usually when someone says “Not to be insulting” that’s exactly what the intention is. My son received all of the help he needed because I fought for it. I’m not interested in your stages of development that you went through, and I’m fairly certain no one else really cared either. OH, I laughed when I read your statement ” I haven’t mentioned it before but I have a “first class degree in psychology” Are you for real? First class is riding in an airplane, not a degree. If you have something to say without irritating people with how incredibly smart you are than I’m all for it. Otherwise, leave me out of it. Funding is being cut in the US ( I have no clue where you are from) for so many different programs, education, schools are closing and I am not much into Politics ( oh yea, I also took a class received an A, that would be first class) but our society does not look out for each other! My story was just that, I shared my experience with my son..That’s It!

  16. Melissa Cruz-Skaggs
    February 4, 2012 at 9:22 pm

    Thanks for sharing your thoughts! If that is your dream for your son and his dream for himself, then that is great for your family. This is an individual perception and situation for each family affected by Autism. Tourettes syndrome was once considered on the spectrum and was booted off. Noteworthy, this will undoubtedly have unfortunate consequences to other families whether they want a label attached or removed from their own children.

  17. Garkis
    February 4, 2012 at 10:19 pm

    I am in Canada. So yes that’s how it works here. It means I graduated with an A average. Try looking it up before you make ridiculous assertions like first class only applies to airplanes. I tried very hard to be respectful of your fears and thought I was doing you a kindness to say I thought you were were worrying needlessly.

    Please at least compare them side by side. You will see fundamentally nothing has changed for the worse and a few things are actually better.

    In 6 months I suspect your will regret your reply.

    You shared your experience with your son. I shared my understanding of the new revisions and my own experience with myself hoping to help. What the fundamental difference is that makes it okay for you to absolutely dismiss what I said and ridicule me I am not quite sure.

  18. Cristi Pennington
    February 5, 2012 at 8:16 pm

    I’m not sure that you were respectful at all. Read your previous Entry. I myself am not a child who needs to be taught by you and how your country diagnosis disorders. My passion for our future children who have these disorders and other disorders is to live life to the fullest with happiness. Ridicule you? Dismiss what you say?? I don’t have to buy into what your opinion is. You made this very personal when you started putting down what I had to say. I was sharing my story with my son! Your opinion cannot judge personal experience. You might want to learn how to talk nicer to people because there were NO words of kindness. You do not impress me, reading your previous entries I get the impression you have only book knowledge on this subject not real experience.

    • Garkis
      February 6, 2012 at 10:55 am

      I never said you did. The DSM changes impact us as well. Right it’s not a real experience to actually live with the disorder myself for 43 years. I get it. Duly noted. I have a passion too. For the future of myself, my friends, those children of parents I have met both on and offline who have become friends but you are right none of my experience counts. I wasn’t trying to impress you with my book knowledge. I actually did think if you had more book knowledge on the DSM you might feel better. Clearly a failure on my part but I will stop trying so don’t worry.

  19. Lynn Lemon
    February 7, 2012 at 1:02 am

    Hi Garkis! I just wanted to say thank you for your post and for talking so openly about your life. I have a friend that has a 13 year old daughter that was diagnosed a few years ago with Asperger and autism. I know absolutely very little about this, only what I have read on the internet. Is there any books or websites you would recommend for me to become knowledgeable so that I can better know this beautiful young girl and support and encourage her mother? The girl loves music and is always listening to her radio, and loves to play the drums. She doesn’t like to be around people that much though and she has outbursts so she is schooled at home except for two or so hours a day. She is so sweet and loves her Mom and Dad so much. Any suggestions you could make would be so appreciated.
    Sincerely,
    Lynn Lemon

  20. Garkis
    February 7, 2012 at 1:15 pm

    Everyone one is different but for me at that age structured social activity was really helpful. I benefitted from programs like cadets, and even sports because what to do is clearly laid out.

    Sounds like they may need to be in smaller groups for her. I play the drums myself and that’s actually a good instrument in many ways as you are part of the band but some distance from most of them. From a sensory point of view for me it also gives me control of the instrument most likely to make sudden unanticipated noises (she may not have those issues though) Drummers are also very key to the whole getting the band to sound decent so can be great for the self esteem if she gets to the point where she can play with others.

    Finding someone a little older than her also on the autistic spectrum to be a mentor may help. Years ago I was asked to meet with a boy who had just been diagnosed with Asperger’s. He burst into tears upon meeting me as never having seen an adult on the spectrum he had somehow come to the conclusion it was a terminal disorder. His mother was shocked but it illustrated that all sorts of unanticipated thoughts and fears can be going on. The boy was greatly relieved to spend time with someone who had had similar issues with school and all that entails and so on and survived it.

    Her own issues and fears are likely totally different but it is often easier for those on the spectrum to tolerate interaction with others on it as well for some reason.

  21. Garkis
    February 7, 2012 at 1:19 pm

    Left out the books and websites I see. That’s a tough one. I think some of Attwood is not too bad from a professional point of view. There are quite a few books out there by people on the spectrum. I have a number of articles I wrote years ago for an online site that I would be happy to share with you if I could work out logistically how to make that happen.

  1. February 2, 2012 at 1:49 pm

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