Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Nadine- I am glad to hear from an adult on the spectrum on board and I think you can bring some of your perspectives as an adult to our support group. There are many kids who have more than one diagnosis and get better quicker with appropriate therapies and that is what we are about here. We like to find out about the different therapies that are available and while one therapy may not work for all we need to be informed.It sounds like you have really done a lot of research and what you have tried has worked for your child. Whatever works is the bottom line. **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Right, that is one of the significant characteristics, but if your child is social that doesn't mean that the diagnosis is thrown out the window and another one applied. Many Autistic kids are social, if you had one, or knew one first hand, you would know this. No one has all the characteristics of specific disorder. Jen > Saying that it's a stereotype to say autism has nothing to do with > social issues or eye contact -isn't that kind of like saying that > apraxia has nothing to do with speech? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Also....kids today are getting the proper therapies and alot of their symptoms are disappearing! Years ago, many of the kids were left to 'be in their own world " where today we know better. We are doing not only reg therapies, but diet and supplements. My son responded quickly to biomed and really no longer has symptoms of autism. Does this mean he was mis-dx or he never had autism? I don't think so, but he also carries an apraxia dx and could have just as easily been dx with just apraxia/dyspraxia. BTW, he did have some ABA therapy way back when he was two and three yrs old but if was a blended approach using floortime. It worked well for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 I'm from New Jersey and of course know first hand children with autism. I know a mom that tried everything that came down the pike (as she said) extreme biomedical -all traditional and alternative therapies. Money was not an object for this family and they spent more than most anywhere -but there was no change. When I last spoke to her when we still lived in NJ her son was 13 she was looking at some new at that time genetic program to try to help. Her son was the classic autistic child -and could no longer live in their home -would only come home on visits once in awhile- because he was in his own world and once in awhile would lash out -and he was getting too big to stop. It became dangerous for her younger daughter. He was severe autistic. I also know Sallie Bernard and her son (SafeMinds Cure Autism Now) I knew children with PDD and apraxia. Hard to explain but kind of going in and out autistic. Then I know those with just mild autism -speech isn't an issue -but they have to be encouraged to talk. Today's preschoolchild with autism is morphing once again and now looks and sounds apraxic. I'm talking being diagnosed autistic- preschool age. (before any therapy -they are social etc. just can't talk) In addition to misdiagnosis hurting those that are misdiagnosed -my fear is that the children with autism in the classic sense will be hurt because autism for someone like the family with the teenager with severe autism above can be tragic. Jeanne's a moderator here and is very willing to state the difference as she has one son with autism and one with apraxia -there is a difference. So how do you know it's not a misdiagnosis if your child is diagnosed as autistic today? (preschool age -prior to therapy etc. social -just can't talk) Perhaps it's not about throwing out the diagnosis if the child is social -perhaps it was a misdiagnosis to begin with -that's my point. perhaps all should be a bit quicker to question a diagnosis. Because when you lump too many things together -like saying everyone in the hosptial is " sick " you end up hurting those who need this diagnosis the most. Those that do have autism. And you hurt those that are misdiagnosed which could be your child (or today based on what I'm seeing -mine!!!) Here's a list of other diagnosis it could be: http://www.wrongdiagnosis.com/a/autism/intro.htm ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 I think it comes down to getting a dr you trust and being informed. My son, a gfcf responder, as some autistics are, was described to me by our new pediatrician as not autistic because he made eye contact. He is not autistic, nor did I think he was then, but that was hardly a thorough eval. I was never asked one question about abilities, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 A lot of schools and peds use only screenings which just determine the likelihood of being autistic. You really want an ADOS done by a qualified clinical psychologist if there is any question about the diagnosis. I'd question anyone who made a diagnosis based on eye contact or any other single criteria (or someone who ruled out the diagnosis on a single criterea). When I suspected my son may be somewhere on the spectrum, I was convinced the experts wouldn't see it. I found the Sohn Grayson checklists which helped me identify the problems I was seeing. I didn't recognize some of the quirky things as a sign of Asperger's. This also helped me when it came time to explain to the developmental pediatrician why I thought there was a problem. See the checklists at http://school.familyeducation.com/learning-disabilities/behavior/56323.html > > I think it comes down to getting a dr you trust and being informed. > My son, a gfcf responder, as some autistics are, was described to me > by our new pediatrician as not autistic because he made eye contact. > He is not autistic, nor did I think he was then, but that was hardly > a thorough eval. I was never asked one question about abilities, etc. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 In our case, my son was social and had eye contact when he was dx. At first, they thought it was just a speech delay but then they saw him stim! He was stim crazy way back then. So sometimes, he would go to the playground and play with the other kids but couldn't talk...but other times he was too busy stimming and would ignore the kids. Anyway, he could usually blend well with the kids and people would always say that he seemed too social to be autistic (pdd). I know several families with children on the autism spectrum. Some are severe, like a few you know.....but many of them are much more mildly affected. This conversation could go on and on......autistic or apraxic?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 > > I'm from New Jersey and of course know first hand children with > autism. I know a mom that tried everything that came down the pike (as > she said) extreme biomedical -all traditional and alternative > therapies. Money was not an object for this family and they spent more > than most anywhere -but there was no change. When I last spoke to her > when we still lived in NJ her son was 13 she was looking at some new at > that time genetic program to try to help. Her son was the classic > autistic child -and could no longer live in their home -would only come > home on visits once in awhile- because he was in his own world and > once in awhile would lash out -and he was getting too big to stop. It > became dangerous for her younger daughter. He was severe autistic. > > I also know Sallie Bernard and her son (SafeMinds Cure Autism Now) > > I knew children with PDD and apraxia. Hard to explain but kind of > going in and out autistic. Then I know those with just mild autism -speech > isn't an issue -but they have to be encouraged to talk. > > Today's preschoolchild with autism is morphing once again and now looks and > sounds apraxic. I'm talking being diagnosed autistic- preschool age. > (before any therapy -they are social etc. just can't talk) > > In addition to misdiagnosis hurting those that are misdiagnosed -my > fear is that the children with autism in the classic sense will be hurt > because autism for someone like the family with the teenager with > severe autism above can be tragic. > > Jeanne's a moderator here and is very willing to state the difference > as she has one son with autism and one with apraxia -there is a > difference. > > So how do you know it's not a misdiagnosis if your child is diagnosed > as autistic today? (preschool age -prior to therapy etc. social - just can't talk) > > Perhaps it's not about throwing out the diagnosis if the child is > social -perhaps it was a misdiagnosis to begin with -that's my point. > perhaps all should be a bit quicker to question a diagnosis. Because > when you lump too many things together -like saying everyone in the > hosptial is " sick " you end up hurting those who need this diagnosis the > most. Those that do have autism. > > And you hurt those that are misdiagnosed which could be your child > (or today based on what I'm seeing -mine!!!) > > Here's a list of other diagnosis it could be: > http://www.wrongdiagnosis.com/a/autism/intro.htm > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Hello, I'm new to this group and have been following this discussion very closely as it directly pertains to my son. I'm concerned that he is not getting the appropriate therapy and hope some of you can help steer me in the right direction if I give a little background... My son is now 26 months old and still makes very few sounds/proto-words. We started working with EI therapists when he was 14 months old and at that time, my main concern was his lack of babbling, lack of pointing, and his insistence on spinning toys. He has made very little progress in speech with EI over the past year working with a play specialist, OT, and SLP 1X/week. As the months passed, the therapists became concerned about his joint attention being inconsistent -- he was always very connected and made great eye contact with social games/physical play, but became very introspective with quieter play. I was also concerned that he may be apraxic as I found him to have many of the " soft signs. " On his second birthday, I was able to get him a speech evaluation with a highly regarded SLP who specializes in apraxia. She said that she couldn't rule it out, but he wasn't making enough sounds for her to diagnose and there seemed to be " something else going on. " I was also finally able to get him two developmental evaluations. One evaluation was done by a psychologist at Children's Hospital Boston and another was done by a multi-disciplinary team (neuropsych/SLP/developmental ped). Both gave him a diagnosis of PDD-NOS, but stressed that he had a lot of great skills and found most of his deficits/atypical behaviors to be largely inconsistent. Over the past two months, we have started working with the SLP who specializes in apraxia in addition to continuing his weekly appointments with the EI therapists. We are also about to start ABA. At this week's appointment, the apraxia SLP said that he is extremely challenging as he's not giving her anything to work with. As of today, the only speech he produces is aya (for yes), mmm (for more), ada (for all done and down), uppa (for up), and adee (for daddy) and aba (for mommy, Elmo, Barney, and pretty much anyone else when asked " who's that? " ) He also makes animal noises, but not with consonants. He has a few signs and the ABA provider is about to start PECS. Interestingly, in the past week, he's started pointing with approx 90% consistency. The apraxia SLP said she will try working with him for a couple more weeks, but if she can't make any progress, she's going to suggest taking a break until ABA brings him further along. Does this seem reasonable, especially to those of you who have children w/ dual diagnoses? Was this your experience? Is it possible that my son is not producing more speech because he may be apraxic and would therefore require more, not less speech therapy in addition to the ABA? I apologize for the long monologue, but any insight would be greatly appreciated! > > > > I'm from New Jersey and of course know first hand children > with > > autism. I know a mom that tried everything that came down the pike > (as > > she said) extreme biomedical -all traditional and alternative > > therapies. Money was not an object for this family and they spent > more > > than most anywhere -but there was no change. When I last spoke to > her > > when we still lived in NJ her son was 13 she was looking at some > new at > > that time genetic program to try to help. Her son was the classic > > autistic child -and could no longer live in their home -would only > come > > home on visits once in awhile- because he was in his own world and > > once in awhile would lash out -and he was getting too big to stop. > It > > became dangerous for her younger daughter. He was severe autistic. > > > > I also know Sallie Bernard and her son (SafeMinds Cure Autism Now) > > > > I knew children with PDD and apraxia. Hard to explain but kind of > > going in and out autistic. Then I know those with just mild > autism -speech > > isn't an issue -but they have to be encouraged to talk. > > > > Today's preschoolchild with autism is morphing once again and now > looks and > > sounds apraxic. I'm talking being diagnosed autistic- preschool > age. > > (before any therapy -they are social etc. just can't talk) > > > > In addition to misdiagnosis hurting those that are misdiagnosed -my > > fear is that the children with autism in the classic sense will be > hurt > > because autism for someone like the family with the teenager with > > severe autism above can be tragic. > > > > Jeanne's a moderator here and is very willing to state the > difference > > as she has one son with autism and one with apraxia -there is a > > difference. > > > > So how do you know it's not a misdiagnosis if your child is > diagnosed > > as autistic today? (preschool age -prior to therapy etc. social - > just can't talk) > > > > Perhaps it's not about throwing out the diagnosis if the child is > > social -perhaps it was a misdiagnosis to begin with -that's my > point. > > perhaps all should be a bit quicker to question a diagnosis. > Because > > when you lump too many things together -like saying everyone in the > > hosptial is " sick " you end up hurting those who need this diagnosis > the > > most. Those that do have autism. > > > > And you hurt those that are misdiagnosed which could be your child > > (or today based on what I'm seeing -mine!!!) > > > > Here's a list of other diagnosis it could be: > > http://www.wrongdiagnosis.com/a/autism/intro.htm > > > > ===== > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Hi there, Two things you said stuck out as possibly similar to our story. 1) The pointing: My son pointed late and when he did the poting was incorrect, with the whole hand rather than the finger at first. We later were told by the gastroenterologist that as a gut impaired child his stomach acids may have wound up in that hand area creating a near arthritic condition. Removal of allergins has helped thatand the pointing is good. Introspective play. My son does not have this but there was a time when he seemed aloof when asked questions. Turns out he had vision issues that when addressed, took away what at first blush seemed to be receptive language issues and motor planning stuff. I am not for one second saying these are your answers or issues, just sharing a story and saying sometimes rulin out things helps clarify what you are dealing with. Dr. generously listed some apraxia labs that may help you: /message/53124 And since you seen to be near Boston this may help you determine if there is a metabolic issue underlying some of this: http://www.vsan.org/rok-az/misc/Metabolic_Geneticist.pdf > > Jen, > > Jeanne here. I have to chime in both my boys have different > > diagnosis'. Adam my oldest has apraxia and was diagnosed at age 2, > > now almost 13. Josh who is diagnosed with pdd at age 2, now almost 9. > > the big difference between the two is Adam couldn't pronouce any > > sounds of speech just said mmmm only, had low muscle tone in his face > > and cheeks when he was born, and it wasn't until 6-7 that we were > > able to understand Adam because of his jargon and articulation > > issues.Josh who was in his own world and didn't listen to his name, > > was clearly autistic, and repeated certain sentences and phrases that > > he saw on tv or like to hear on his computer games. At the same time > > Josh' words at the beginning came slowly but was not really sociable > > but he was able to say the full word even though we had to coax it > > from him ages 3-4 until he could repeat a whole sentence. Which he > > does now. I certainly wouldn't have given Adam ABA therapy because > it wasn't the right therapy for him, but for Josh absolutely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 I was not going to respond anymore on this topic but I feel I must. First of all we cannot blame the school systems. For one thing, if a child displays sensory behaviors and stimming behaviors, they are going to be treated the same way a child on the spectrum would be treated. These behaviors fall under the ASD umbrella and since sensory integration disorder is not yet an official medical diagnosis this is all these therapists have to work with. If you are lucky and have a Dr that agrees with the sensory integration theory they can give a referral to an occupational therapist. Autism and sensory integration disorder share many of the same symptoms, difficulty with sensory processing, Lack of eye contact, flapping of hands, over sensitivity to sound can also accompany Sensory integration disorder. MMMM Sounds similar to the autism spectrum. Now not all children with sensory integration disorder have autism spectrum disorders and are not necessarily Autistic, but don't be so quick to rule it out either. I felt really upset yesterday when I was being challenged that my child may not have the correct diagnosis. I feel that it was researched and he has a good Dr and everyone at the moment agrees with the diagnosis. My son is getting the services he needs, I am not worrying about the insurance piece I am going forward with what I believe. Sure I wish my son didn't have Autism, it doesn't change how much I love him and I don't want another son. I guess what I am getting at is, with the symptoms so much the same, how can you blame people who diagnose when it isn't even an official medical diagnosis. The treatment for the sensory issues is the same and it seems like there is all this negativity that a child may be grouped into a category with an Autistic child and that would be so terrible wouldn't it? It is complex and it is difficult for all involved, I just wanted to say don't rule out anything until you have all the pieces of the puzzle, and don't give advice like you know for sure a child has DSI over Autism, you don't know that, and it causes a lot of problems for Mother's that have children with autism. Not wanting a debate, just wanting to explain how I feel, and I think that is something we can do here, right? Jen **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Hi " Juladler " , have you considered heavy metal toxicity? As someone else in this thread mentioned, it is common to misdiagnose heavy metal poisoning as apraxia. You can get a porphyrin urine test completed by this French lab. Its easy to do. Just get a pediatric urine bag from your local hospital/clinic and put in on your child when they fall asleep. Mail it in the morning. A DAN! doctor could help you order the test (or another physician who understands that blood tests only detect recent heavy metal exposure). http://www.labbio.net/pages/autisme_envir_intoxication_eng.htm--- In , " ilizzy03 " <lizlaw@...> wrote: > > Hi there, > > Two things you said stuck out as possibly similar to our story. 1) > The pointing: My son pointed late and when he did the poting was > incorrect, with the whole hand rather than the finger at first. We > later were told by the gastroenterologist that as a gut impaired > child his stomach acids may have wound up in that hand area creating > a near arthritic condition. Removal of allergins has helped thatand > the pointing is good. > > Introspective play. My son does not have this but there was a time > when he seemed aloof when asked questions. Turns out he had vision > issues that when addressed, took away what at first blush seemed to > be receptive language issues and motor planning stuff. > > I am not for one second saying these are your answers or issues, just > sharing a story and saying sometimes rulin out things helps clarify > what you are dealing with. > > Dr. generously listed some apraxia labs that may help you: > > /message/53124 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 I don't think was blaming schools as I believe she works in a school. I think the general point is we have to realize all the systems that affect our kids, legal, educational, and to some extent medical, have their limits and we as parents have to be a sort of hybrid secretary in all this to help our children get the right medical, educational, and legal supports. > > I was not going to respond anymore on this topic but I feel I must. First > of all we cannot blame the school systems. For one thing, if a child displays > sensory behaviors and stimming behaviors, they are going to be treated the > same way a child on the spectrum would be treated. These behaviors fall under > the ASD umbrella and since sensory integration disorder is not yet an > official medical diagnosis this is all these therapists have to work with. If you > are lucky and have a Dr that agrees with the sensory integration theory they > can give a referral to an occupational therapist. Autism and sensory > integration disorder share many of the same symptoms, difficulty with sensory > processing, Lack of eye contact, flapping of hands, over sensitivity to sound can > also accompany Sensory integration disorder. MMMM Sounds similar to the > autism spectrum. Now not all children with sensory integration disorder have > autism spectrum disorders and are not necessarily Autistic, but don't be so > quick to rule it out either. I felt really upset yesterday when I was being > challenged that my child may not have the correct diagnosis. I feel that it was > researched and he has a good Dr and everyone at the moment agrees with the > diagnosis. My son is getting the services he needs, I am not worrying about the > insurance piece I am going forward with what I believe. Sure I wish my son > didn't have Autism, it doesn't change how much I love him and I don't want > another son. I guess what I am getting at is, with the symptoms so much the > same, how can you blame people who diagnose when it isn't even an official > medical diagnosis. The treatment for the sensory issues is the same and it seems > like there is all this negativity that a child may be grouped into a category > with an Autistic child and that would be so terrible wouldn't it? It is > complex and it is difficult for all involved, I just wanted to say don't rule > out anything until you have all the pieces of the puzzle, and don't give advice > like you know for sure a child has DSI over Autism, you don't know that, and > it causes a lot of problems for Mother's that have children with autism. > Not wanting a debate, just wanting to explain how I feel, and I think that is > something we can do here, right? Jen > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer? video=15 & ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 you say " MMMM Sounds similar to the autism spectrum. " Most children with apraxia use one sound over and over to communicate because they don't know how to move their tongue or mouth on command and for whatever reason most say " mmm " -that is not autism -there's probably a ton of reasons why a child will only say " mmm " including they are hearing impaired -that's where differential diagnosis comes in. My son said " no " by stamping his foot and saying " MMM " He would say " ABC 123 " by saying " mm " in the same tone as it says in the archives. When Tanner was 3 he souned the most like when she says abc 123 except he would just say " mmm " in place of any other sound http://www.debtsmart.net/talk/sarah.html There weren't as many kids on the Talking Page when Tanner was first diagnosed-and listening to at 5.9 years old made me cry http://www.debtsmart.net/talk/brandon.html Problem is that wasn't diagnosed apraxic until he was 5 years old! Some of you with misdiagnosed children are missing precious time. As we've said a few times you would need a speech and occupational therapy exam, and a neurodevelopmental medical exam from a pediatric neurologist or developmental pediatrician to confirm or rule out apraxia. You don't need a psychological exam for apraxia as apraxia is not a psycholgical disorder. DSI is also not autism and is found not just in children but in adults with TBI after say a car accident. Have you read The Out Of Sync Child? We also cover this in The Late Talker book. Like hypotonia -it's a " soft sign " and below are two archives from years ago to show that this is something that has been confused before. I understand that there is much more money in autism then any other disorder just about right now -but that doesn't mean we lump every child in the world as autistic as (again) autism therapy is not appropriate for anyone but an autistic child. from an archive on this as this too has come up before and here is a quote on what is appropriate for autism therapy from the CDC -but you'll find this all over the net. Speech therapy isn't even mentioned! ~~~~~~ " People with autism can make progress if they receive appropriate, individual intervention. Pre-school children who receive intensive, individualized, behavioral interventions show good progress. In addition, limited pharmacological interventions are available to treat symptoms associated with autism. " (from the same page of the CDC that says that 70 to 75% of autistics are mentally retarded. And the last point -apraxia is not a cognitive disorder, and most apraxics have average to above average IQ) http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-facts.htm#Treatable So final point -if one is going to " vehemently tell you " what is part of the autism spectrum -again -define what that means. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Re: Difference between dyspraxia, SID and high functioning autism? -DSI appears to be a symptom in various diagnosis today -it does not mean autism. " Who it effects 12-30% of all children Some type 70% of children with learning disorders Autism ADHD Premature infants Anxiety Head trauma Commonly seen in boys 80% " www.public.coe.edu/~mbaker/baker/neuro/lectures/~Sensory%20Integration%20Dysfunc\ tion%20-%20Ricca%20Klein.ppt So if sensory issues are there chances are it could be a number of reasons...on the other hand -if social issues are not there -perhaps autism is a misdiagnosis. (happens too often...check the archives) " The hallmark feature of autism is impaired social interaction. Parents are usually the first to notice symptoms of autism in their child. As early as infancy, a baby with autism may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time. A child with autism may appear to develop normally and then withdraw and become indifferent to social engagement. " http://www.ninds.nih.gov/disorders/autism/detail_autism.htm Apraxia is not a social disorder it's a motor planning disorder, but typically today it is multifacted and includes DSI, mild hypotonia or some other soft sign. Here's some on what is apraxia from the CHERAB site: http://www.cherab.org/information/speechlanguage/verbalapraxia.html (more in The Late Talker book) Not that it's asked -but difference between late talking and apraxia http://www.cherab.org/information/latetalkerhandout.html Below is an archive on more: Re: Apraxia...Dyspraxia...Autism....I am so confused! Hi Shane and Robin! Sensory Integration Dysfunction or DSI, is a separate unique diagnosis that can stand alone or be found co existing in other conditions -including but not limited to autism. Sensory Integration Dysfunction can go undetected when mild, or could be acquired after a head injury, or as a symptom of Transverse Myelopathy. http://www.hopkinsmedicine.org/jhtmc/clinical.htm Again just because it looks, talks and walks like a duck -could be a kid trick or treating..doesn't mean it's auto-autism. (either that or you can get autism from a car accident if you hit your head and develop sensory issues!) Sounds like you are doing all the right things just in case -and that's the best way to go. As you may recall from your brother - therapy for autism itself is not the same as therapy for apraxia. There is not enough ST and OT in ABA approaches. Therapy for sensory issues however are always appropriate for anyone who is diagnosed as having sensory issues -no matter what the other diagnosis are. Find out what each diagnosis is that you are dealing with and provide appropriate therapies for each and it won't be so confusing. At 24 months your child could be diagnosed with oral apraxia -but not verbal. At 24 months typically the diagnosis would be suspected apraxia and you could start appropriate therapy for apraxia just in case. Won't hurt and could help if not apraxic...but will be invaluable if apraxic. And in the US -apraxia and dyspraxia mean the same thing. Take one step at a time -we are here for you as a group and we have tons of parents and professionals here who can lead you down the early stages of the road you are now on. And it's great you read The Late Talker...I'm one of the co authors and know we put info in there to help parents just like you! ~~~~~~~~~~ I don't disagree that the rise in multifaceted neurologically based communication impairments can have overlaps in symptoms -such as sensory integration dysfunction for example, but then again -having sensory integration dysfunction does not mean you are on the autistic spectrum. And if it does it means adults who sustained traumatic brain injuries (TBI) due to a car accidents can be diagnosed as on the autistic spectrum too. " What Disabilities Can Result From a TBI? " Many TBI patients have sensory problems, especially problems with vision. Patients may not be able to register what they are seeing or may be slow to recognize objects. Also, TBI patients often have difficulty with hand-eye coordination. Because of this, TBI patients may be prone to bumping into or dropping objects, or may seem generally unsteady. TBI patients may have difficulty driving a car, working complex machinery, or playing sports. Other sensory deficits may include problems with hearing, smell, taste, or touch. Some TBI patients develop tinnitus, a ringing or roaring in the ears. A person with damage to the part of the brain that processes taste or smell may develop a persistent bitter taste in the mouth or perceive a persistent noxious smell. Damage to the part of the brain that controls the sense of touch may cause a TBI patient to develop persistent skin tingling, itching, or pain. Although rare, these conditions are hard to treat. " http://www.ninds.nih.gov/disorders/tbi/detail_tbi.htm And it's not just apraxics assumed part of the spectrum. If you want to talk theory " Quick Index to the Theories of Autism Mehl-Madrona, M.D., Ph.D. Opioid Excess Theories Opioid-like substances Dipeptidyl peptidase deficiency Dermorphin and Sauvagine Opioids and secretin Opioids and glutathione Opioids and immunosuppression Gluten/Casein Theories and Relation to Celiac Disease Opioid receptors Urinary IAG Fatty Acids Gamma Interferon Theory Free Sulphate Theory Other Sulfation Problems in Autism Cholocystokinin and Autism Oxytocin and Vasopressin in Autism Autism and Amino Acids Methylation Theory of Autism Stress and Immunity Autoimmune Theory Antibodies to Myelin Basic Protein Found in Autistic Children Viral Infection Theory Vaccinations and Autism DPT and brain damage MMR vaccine and autism Research on MMR, Autism Connection Compared Elevated Rubeola Titers and MMR Vaccine Vaccination During Pregnancy and Risk for Autism Vaccination and the risk for autism Action of Secretin Theories Secretin and cAMP Lectins and secretin Intestinal Permeability Theories The Concept of Increased Intestinal Permeability Gastrointestinal Abnormalities Among Children with Autism Binstock's Anterior Insular Cortex Hypothesis for Linkage Between Gut and Brain Prenatal Aspartame Exposure Vitamin A Deficiency and Autism Orphanin Protein: Orphanin FQ/nociceptin (OFQ/N) Smoke and Air Pollution May Be Related to Learning and Behavioral Problems http://www.healing-arts.org/children/autism-overview.htm Perhaps -looking at the oh so many clinically researched theories above... so much is assumed as part of the autism spectrum vs. say the sensory integration spectrum, communication impairment spectrum or " Prenatal Aspartame Exposure spectrum " because autism is where the funds for research are? I mean why have the tail wag the dog when there are over far more with communication impairments in this world without autism? ~~~~~~~~~~~~~~~~~~~~~ ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Thank you so much for your responses. I am going to start looking into more of the biomedical approaches and will definitely send away for the porphyrin urine test, but I'd like to start with ABA and fish oil so that I can keep track of what is working and what isn't. After reading all of the messages on this topic, however, I'm still confused as to whether I'm getting my 2 year old the correct therapy. Can someone please tell me how I would know if his delayed speech is due to apraxia vs. ASD? The speech therapists tell me that he doesn't give them enough to work with because he doesn't try to talk despite encouragement. But, my husband and I have found that when he is really excited about something and tries to say a word like mama, it consistently comes out wrong. And when we hear him babble ma ma ma ma, and try to get him to repeat it, he can't or won't. Does this sound like speech delay due to apraxia vs. autism? Thanks again for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 One question I love to ask parents is this -on his second birthday did he blow the candles out on his cake? If you can imagine trying to do this without moving your lips -that's how my son tried and of course couldn't. That would be a sign of oral apraxia that could be diagnosed before 3. You say you took your child to a well known SLP in the world of apraxia -but problem is some of the classic signs of apraxia (and thus some of the well known SLPs in this area) do not acknowledge the multifaceted aspects of apraxia. Apraxia used to be rare and just like autism has morphed from 50 years ago -so has apraxia. Today it's rare to find a child here with " just " verbal apraxia even though most parents of newly diagnosed children only know about the verbal part. You are already a step ahead in that you notice some " soft signs " And that's great because early detection leads to early intervention. Earlier is always better as we all have the goal to get our children up to speed by kindergarten. Have you taken your child to a knowledgeable pediatric neurologist or developmental pediatrician yet because if your child is not autistic you do not want ABA therapy as it's not appropriate and can be detrimental. Of course on the other hand your child could be diagnosed with both apraxia and autism -and then you could seek appropriate modified ABA with a therapist that is knowledgeable about apraxia -but you don't want ABA therapy for the apraxia. I would hold off on the complex biomedical aspects until you secure an appropriate diagnosis and begin appropriate therapies and start the fish oils and vitamin E. As Dr. says -give that at least a few months. Most of us never had to do anything but what was mentioned in the archives or The Late Talker -therapy and EFAs. I know today people here are a bit over enthusiastic about all they do -and it makes other new parents feel guilty as if they are not doing enough. If your child is doing well on the basics then that's all that matters. Most that have children doing well today are not here everyday posting anymore -but I assure you that they knew about everything but didn't jump into doing everything. (and like me didn't have to -and I have 2 one apraxic -one ADHD!!) I have been told just like posted that due to frustration aparxic children can exhibit signs that may appear as autistic which fade as alternative forms of communication are provided. PECS which you are already doing -and simple sign. Here's a short message about a few types of therapies for apraxia from Rhonda from ECHO of Canada who is one of my other co founders of Speechville. Some more information for the group: The Kaufman kit is a set of large laminated cards, with very bright and colourful pictures on one side of the card, and approximations on the other side. For example, " apple " . You show the card to the child. Then work your way up through the approximations -- the most important thing is to accept approximations for the word. What I would do is show Maddie the picture. She would say: " ah-puh " . I would then say back to her the next approximation (they are printed on the other side of the card), which is " a-puh " . If she was able to do that, I would then go to the next approximation: " ah-po " , and so on. If she was not able to do an approximation I would stop. Of course, the approximations go up to the correct pronunciation of the word, " apple " . I found it very helpful to be able to guide Maddie to the correct pronunciation of the word using the cards as a guide. I worked with her for about 6 months with the first kit, and she is ready for the second kit. The most important thing is that Maddie LOVES the cards, she calls them her " toy " -- She will pick up the box (no mean feat) and bring it over to me saying: " I want play this toy Mommy " . Talk about successful therapy techniques!! http://www.speech-express.com/KaufmanKitArticle.html " Easy Does it for Apraxia " is a set of two workbooks, and the only place you can get it is from LinguiSystems -- http://www.linguisystems.com I got the Preschool version, which is for ages 2-6. There is a Materials Book and a companion therapy Manual, which describes how to use the materials. Another wonderful book is " The New Language of Toys: Teaching Communication Skills to Children with Special Needs " by Sue Schwartz and Joan Heller , also available through CHERAB. Hope this helps, Rhonda son Cherry mom to Maddie, age 4, oral-motor sequencing issues, suspected apraxic, DSI Richmond Hill, Ontario CANADA As far as imagination -many of us found this to be a delayed area in our apraxic child- here's a long archive on that too. From: " kiddietalk " <kiddietalk@...> Date: Wed Aug 4, 2004 10:26 am Subject: Re: Importance of Play Hi Candi! I can relate to what you are going through -and can say that in most cases " this too shall pass " unless there 'are' other issues. Below are some archives -quite long, but we are on our way (again) for some ride therapy so can't edit what's here. Just a quick update -Dr. Jonas yesterday, amazed at the surges Tanner has gained across the board in speech is quite interested in exploring more of this type of(vestibular stimulation?)therapy for children. We are in plans to move ahead. Anyone in Florida wanting more info -stay tuned. We'll probably need a few children that want to play! Speaking of which -does anyone know anything about Heelys? http://www.heelys.com/ We just bought a pair for both of our boys since they are pretty hot here with the kids. They make me nervous -but I know they are good for coordination/motor planning and social reasons. From: " kiddietalk " <kiddietalk@...> Date: Sat Mar 13, 2004 6:28 pm Subject: Re: Trish-socially engaging but still autistic???/perhaps not -imagination Hi Traci, and Trish and all! About imagination...now this is long! I wouldn't jump to conclusions that a young child with a communication impairment has problems with imagination. Like anything when you are fighting to keep your head above water so you won't drown, it's hard to enjoy the beauty of the ocean. (yes I was a lifeguard) In other words -when a child is struggling to communicate basic needs, imagination may take a back seat. It may be there, but needs to be encouraged out. Tanner today at 7 years old is not at 'all' shy. If anything it amazes his teachers how outgoing he is and not the least bit self conscious of the way he speaks, even though he still has obvious speaking problems at times. But...it wasn't always like that. Preschool age and pre - knowledge age of what Tanner was dealing with -he actually would withdraw around others and go into a shell. Tanner did well with one on one playdates -not at all group. Tanner was never considered autistic or PDD by any of the neurodevelopmental MDs or SLPs or OTs or teachers that worked with him professionally. Nor was he ever considered autistic by any lay people. There is a difference in autism and apraxia -and differences in how to work with both appropriately. Proper diagnosis of one or both is most important. I find this to be a very important topic and very misunderstood even by some professionals. So below is a three year archived history of some tips we used to assist Tanner in developing a strong imagination. Here are some ways to do this that I posted when Tanner was 4 From: " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Autistic kids can be verbal or non verbal. The non verbal ones that I have seen have diagnosed or undiagnosed apraxia of speech. This is important to know because it changes the dymnamics their therapy. A child with autism that is not verbal my have a difficult time with ABA that is commanding language. (Although, the IBI programs I have seen here in Ontario, don't focus on that immediately, and usually tries to get the child to use signs, gestures or pictures for early communication.) These sorts of IBI programs are successful here in Ontario Canada for both children with apraxia and autism or a child with both. I am not sure what ABA looks like where your are, but around here, I am seeing children with autism and or apraxia, successful in this program that looks nothing like ABA programs did not that many years ago. Your speech therapist is not right for your child if he is waiting for your child to " give him enough " to work with. You need a therapist that is on the other side, giving YOUR CHILD enough to work with by whatever means that takes. N juladler wrote: > Thank you so much for your responses. I am going to start looking > into more of the biomedical approaches and will definitely send away > for the porphyrin urine test, but I'd like to start with ABA and fish > oil so that I can keep track of what is working and what isn't. > > After reading all of the messages on this topic, however, I'm still > confused as to whether I'm getting my 2 year old the correct therapy. > Can someone please tell me how I would know if his delayed speech is > due to apraxia vs. ASD? The speech therapists tell me that he doesn't > give them enough to work with because he doesn't try to talk despite > encouragement. But, my husband and I have found that when he is > really excited about something and tries to say a word like mama, it > consistently comes out wrong. And when we hear him babble ma ma ma > ma, and try to get him to repeat it, he can't or won't. Does this > sound like speech delay due to apraxia vs. autism? > > Thanks again for your help! > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 > Nadine- I am glad to hear from an adult on the spectrum on board and I think you can bring some of your perspectives as an adult to our support group. Thank you so much for writing this. It was actually very difficult for me to write what I did. My own " social impairment " manifests as social anxiety. One of the reasons that I represented children (I no longer practice) is that they motivated me to overcome that. Reading the misunderstanding that people with autism are unintelligent had the same effect I guess:-) One thing that I want to say now that is have " outed " myself is make sure (as I'm sure you already do, everyone) that your children never get the impression that because they are different you consider them something broken that needs to be fixed. Wanting to do everything that you can to help them is expected - but try not to seem too desperate about it. Does that make sense? Also don't talk about their challenges or how difficult that can make life in front of them. Kids understand much more than you think. You know in the Living with Autism video on the Autism Speaks website when the mom talks about how she thought about driving off the bridge with her and her daughter in the car? Well, her daughter was in the room when she said that and I could just tell that she knew what she was saying. It made me cry. For her daughter. The one thing that made me sad in Autism: A Musical was when the mom said that society would never value her child because she has autism. Is that true? I hope not. All of this has motivated me to go and have my own diagnosis reconfirmed. I am thinking about maybe trying to do something educatiional and motivational to show people that they may be misunderstanding what autism looks like in some people. Maybe then more people will value us. Maybe not. Worth a try. I haven't read all of the responses in this chain. I have not been feeling well and I saw things were getting tense with some folks disagreeing. I was afraid it would cause me stress and that would make my GI issues worse. Anyway - if anyone wants to write to me privately please do. I only want to help other kids. I would never suggest something I thought would hurt. I would be willing to share anything at all about our own experience to anyone who writes me. Regards, Nadine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 a quick thought on the ABA method and Apraxia. Since we've been discussing that sometimes there are autistic kids with Apraxia, you can sometimes see how it's possible to overlap an ABA method with something like the Kaufman cards. It's possible to take SEVERAL different methods and combine them to create something that will work specific to that particular child and his/her issues. I know that Asa does NOT have Autism and isn't on the spectrum, so he's the " typical " Apraxic child (there really aren't any kids who are typical LOL) but I know that he responds quite well with a mixture of the Kaufman cards done in a manner similar to ABA, but then with a bit of PROMPT thrown in there. So far-- that's reaped great results for him, so I know that it's Do-able to mix methods, and while I don't believe that ABA would EVER work for him as an Apraxic child, I know that a MIXTURE of the methods work quite well. becky **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 I concur completely with not making children feel (that you feel) they are broken and need to be fixed, but I disagree with not talking about their challenges--not in front of them but directly to them. High functioning kids know that they are struggling, failing, just not " getting it " in the areas that this is in fact true for. It seems only kind and helpful to let them know why, and that you accept and recognize their weak points as well as their unique gifts. My oldest son is clearly on the spectrum now, but not nearly as far on as he used to be. He is also very gifted. As another Aspie, I feel comfortable discussing with him that some things are just going to be a lot harder for us to master and to be successful with than they are for other people. At almost 12 he still can't really have a reciprocal conversation or make decent eye contact or recognize social cues. His handwriting is illegible and he overreacts to his younger brother's hassling all day long. On the other hand, he is an absolute rock star academically at his school for gifted kids and is going to the state geography bee this week. He eats like a pig and plays the cello like an angel. In my opinion admitting that he is very behind others in some areas, just as he is so far ahead of others in different areas, fosters self acceptance and empathy which, of course, is a very basic deficit in the autistic mind. I have taught him that our style of brain is different, and how it is different, and that it is fine. Some things are harder, some are easier. We must learn slowly and intellectually social skills that others know intuitively, but we can grasp physics and algebra and make maps from toddlerhood. I wish someone had explained this to me as a child. I do not, however, share with him all of my greatest frustrations with him, or fears for his future, or discuss the major regression he took into autism, or my regrets about it. The woman in the video talking about driving off the bridge makes me very sad, too. , " nadine_silber " <nadine_silber@...> wrote: > > > One thing that I want to say now that is have " outed " myself is make > sure (as I'm sure you already do, everyone) that your children never > get the impression that because they are different you consider them > something broken that needs to be fixed. Wanting to do everything that > you can to help them is expected - but try not to seem too desperate > about it. Does that make sense? Also don't talk about their > challenges or how difficult that can make life in front of them. Kids > understand much more than you think. You know in the Living with > Autism video on the Autism Speaks website when the mom talks about how > she thought about driving off the bridge with her and her daughter in > the car? Well, her daughter was in the room when she said that and I > could just tell that she knew what she was saying. It made me cry. For > her daughter. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Re: self acceptance and empathy which, of course, is a very basic deficit in the autistic mind. Maybe it is just me but I see a deficit of this everywhere. You sound like you are doing great things for your child. Bravo! How lucky he is to have you for his mom. Because my children are young I have been criticized for trying to change them. As outspoken as I am here I am not so in person. My family in particular vacillates between thinking I am overreacting and not accepting the kids for who they are and on the other hand thinking they are worse off than they are and wondering if I am doing enough. In the end I want now what I have wanted from the start...a removal of whatever causes physical suffering to them. I saw them growing into gut stuff that I struggled with for years and never got help for despite many tests, etc. Turns out in my young children those issues caused other stuff, auditory and neuro things that lessened and in some cases were removed by healing physical stuff. I have not yet come across a parent on this board or in real life who in dealing with this does not accept their child. I know they exist but I have not met them and truly believe they are a minority. > > > > > > One thing that I want to say now that is have " outed " myself is make > > sure (as I'm sure you already do, everyone) that your children never > > get the impression that because they are different you consider them > > something broken that needs to be fixed. Wanting to do everything that > > you can to help them is expected - but try not to seem too desperate > > about it. Does that make sense? Also don't talk about their > > challenges or how difficult that can make life in front of them. Kids > > understand much more than you think. You know in the Living with > > Autism video on the Autism Speaks website when the mom talks about how > > she thought about driving off the bridge with her and her daughter in > > the car? Well, her daughter was in the room when she said that and I > > could just tell that she knew what she was saying. It made me cry. For > > her daughter. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 > I disagree with not talking about their challenges I don't think that I expressed myself well. I did not mean do not discuss things with your child. I meant don't talk about them with others as if you child was not there. What I personally can't stand, and others I have spoken with agree, is when parents go on and on about how they " lost " their kids while their kids are sitting right there. Your child has challenges. He/she is not dead. That's all. Discussing things with your kids is important though. In fact I wish more people would take the time to talk to their children with autism than about them. Nadine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 > Re: self acceptance and empathy which, of course, is a very basic deficit in the autistic mind. I am not an expert on autism just because I have been diagnoed with Asperger's. Every person is different. And I know that there are many times that I am pretty clueless/oblivious to the fact that others are feeling and/or experiencing something. But I really don't think that I lack empathy. If I did I wouldn't have spent all of the time and effort - which took a huge toll on me by the way - to overcome my anxiety and represent children who needed my help. I knew that they felt helpless because that is how I had felt when I was their age. I did not want them to feel that way. Isn't that that empathy? Maybe I'm wrong. Maybe it's something different. If it is the same - does that mean I don't have autsim? I have been re-evaluated and diagnosed at various ages. I don't think it's that simple. Maybe we make too many general conclusions about what are " basic deficits in the autistic mind. " It's true I have a problem with self-acceptance. But only because others have not accepted me. Thank goodness my Mom did. That really helped. As a mom myself I know that it is hard and often stressful. II did not mean to diminish that. Nadine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 BTW: My issues with self-acceptance are my own. Other Aspies have told me that I need to get over it and be proud of who I am. I'm getting better at that. I'm pasting an interesting article below about another woman with Asperger's. If you read the last paragraph you'll see that she did not know that lack of self-acceptance was supposed to be one of her defecits too:-) I see similarities with her but I am also different. We are all different. You have seen one person with autism you have seen one person with autism. Asperger's: My life as an Earthbound alien http://www.cnn.com/2008/HEALTH/conditions/03/28/autism.essay/index.html Story Highlights Woman says Asperger's syndrome diagnosis at 48 helped explain " otherness " People with Asperger's are often ultra-focused on sometimes obscure topics With intensified senses she's ultra-attuned to lights, noise, textures, and smells Asperger's syndrome is one of the autism spectrum disorders One CNN manager, who asked to remain anonymous, recently learned -- at 48 -- that she has Asperger's syndrome, a form of autism. Today she shares an inside view of life with the condition. ATLANTA, Georgia (CNN) -- Recently, at 48 years of age, I was diagnosed with Asperger's syndrome. For most of my life, I knew that I was " other, " not quite like everyone else. I searched for years for answers and found none, until an assignment at work required me to research autism. During that research, I found in the lives of other people with Asperger's threads of similarity that led to the diagnosis. Although having the diagnosis has been cathartic, it does not change the " otherness. " It only confirms it. When I talk to people about this aspect of myself, they always want to know what it means to be an " Aspie, " as opposed to a " Neurotypical " (NT). Oh, dear, where to start . ... The one thing people seem to know about Asperger's, if they know anything at all, is the geek factor. Bill Gates is rumored to be an Aspie. We tend to have specialized interests, and we will talk about them, ad infinitum, whether you are interested or not. Recognizing my tendency to soliloquize, I often choose silence, although perhaps not often enough. Due to our extensive vocabularies and uninflected manner of speaking, we are called " little professors, " or arrogant. I don't quite understand small talk, and early in my adult life, solecisms were frequent. At meetings, I launch into business without the expected social acknowledgments. It's not that I don't care about people, I am just very focused on task. Do you have to rehearse greeting people to reinforce that you should do it? I do. I am lucky to have a very dear friend who savors my eccentricities. She laughs, lovingly, about one particular evening at a restaurant. Before she could get seated, I asked her what she knew about the golden ratio and began to spew everything I know about it. I re- emphasize how lucky I am to have her as a friend, because this incident occurred long before I was diagnosed. A misconception is that Aspies do not have a sense of humor. It is true that we can be very literal, so we often miss the humor in everyday banter, but we can and do enjoy even subtle humor. Our literal interpretations, however, can be problematic. In first grade, whenever someone made a mess in the classroom, the teacher would ask a student to get the janitor. The student would come back with Mr. (not really his name), who carried a broom and large folding dustpan. When I was asked to get the janitor, I looked all over the school and reported back to the teacher that I could not find it. After all, the person was Mr. , so the janitor must be the object, right? I lack the ability to see emotion in most facial expressions. I compensate for this deficiency by listening to the inflections in people's voices and using logic to determine emotional context. The words people choose, their movements, or even how quickly they exit a meeting can provide clues to emotion. I also have intensified senses -- touch, taste, smell, sight, and sound -- so I am attuned to lights, noise, textures, and smells. In a " busy " environment, I will eventually go into sensory overload and my mind will go blank. When this happens, I have to " go away " mentally for a brief period to regain focus. When I " return, " I have to piece together what occurred while I was " away. " The additional mental processing I must do to function every day is fatiguing, and I don't handle " ad hoc " very well. Being asked to respond quickly in the midst of all this other processing is difficult, sometimes impossible. I am so sensitive to touch that a tickle hurts me. This is the hardest concept for most people to understand. How can a tickle hurt? All I can tell you is that it does, so I avoid being touched except by those who have learned how to touch me. Hugs are dispensed infrequently, but if I do hug someone, I resemble enstein's monster, arms extended to control contact. When my dad (who I suspect is an Aspie, too) and I hug, we both have " the approach. " We sometimes miss and have to re-approach a couple of times until a brief, awkward hug is achieved. In school, other children noted my differences, and I was bullied (and tickled into fits of despair) for years. Already needing extended periods of time alone, my response was to become even more of a loner. Uh oh. When you are weird, you are a joke. When you are a loner, you frighten people. It's always the quiet ones. ... I am married (wow!), and my brilliant husband is an absolute sweetheart. I don't know any other man who has the self-confidence to be pushed away (sometimes sharply), both physically and mentally, as often as he has been. He has been gentle and patient (and, yes, frequently emotionally depleted) as we both worked through my need for space, tendency to go so deep into my own world that the real world and everyone in it cease to exist, and sensitivity to touch during the 26 (soon to be 27) years of our marriage. I live with anxiety, because the world can be overwhelming and people have expectations that I always, sooner or later, fail to meet. I cannot begin to tell you how many times I have been told that I am rude, inaccessible or cold, yet I have never purposely tried to harm anyone, nor do I mean to be, well, mean. I could tell you so much more, but instead let me share one last insight. Don't pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for " normalcy. " E-mail to a friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Maybe it is me but the social clueless thing I hav seen in nonautistics and I do not think I am surrounded by the undiagnosed. I wonder if it is not similar to the lack of pain sensation thing some of our kids have. I don't think it is hopeless and I believe it has a physical cause. What that is is the big question and likely answered differently depending on the person. As for empathy, Nadine, if you are not empathetic then I really do not understand that definition. Your representation of kids, your assistance to this board, and your persistant investigation of the specific things that affect your son, show great empathy and kindness in my opinion. Your mom sounds like she did well by you, as you are doing for your own children. In my book you are an empathetic rock star. I offer this as my opinion, not a PC attempt at anything, just calling it as I see it. > > Re: self acceptance and empathy which, of course, > is a very basic deficit in the autistic mind. > > I am not an expert on autism just because I have been diagnoed with > Asperger's. Every person is different. And I know that there are many > times that I am pretty clueless/oblivious to the fact that others are > feeling and/or experiencing something. But I really don't think that I > lack empathy. If I did I wouldn't have spent all of the time and > effort - which took a huge toll on me by the way - to overcome my > anxiety and represent children who needed my help. I knew that they > felt helpless because that is how I had felt when I was their age. I > did not want them to feel that way. Isn't that that empathy? Maybe > I'm wrong. Maybe it's something different. If it is the same - does > that mean I don't have autsim? I have been re-evaluated and diagnosed > at various ages. I don't think it's that simple. Maybe we make too > many general conclusions about what are " basic deficits in the autistic > mind. " > > It's true I have a problem with self-acceptance. But only because > others have not accepted me. Thank goodness my Mom did. That really > helped. As a mom myself I know that it is hard and often stressful. II > did not mean to diminish that. > > Nadine > Quote Link to comment Share on other sites More sharing options...
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