"Autism Spectrum?"

WTF? Sage has Sensory Integration Disorder. I have finally started getting some leads on someone to evaluate and help me learn how to better deal with this. BUT, she is not "developmentally delayed" nor does she have ANY other autism spectrum symptoms. I kinda freaked out when one of the psychologist just causually mentioned "well kids on the Autism Spectrum often......" WHAT? I used to work with autistic children, and it was a NARROW diagnosis. She agreeed with me, and that the "umbrella" of "autism spectrum" is due to where it is placed on the DSM IV, and many many kids with SND are not "autistic." Sage has a sense of humor (something, at least when I was in school, that we learned was basically absent in Ausperger's and Autistic kids, sadly.) She can read people's faces, and communicates very well (one of the first questions I was asked are "are there any communication problems?" Kid was signing at 5 months, talking at 6 months, and said sentences at 12 months. BUT, I guess the "spectrum" is what it is. Sad thing is, kids who are "gifted" as well as "challenged" often have difficulty getting treatment. One place in our area which is renowned for treating SND, ONLY takes kids who have DD. Sage is too "Developmentally advanced" for them to accept her for treatment. *sigh*

I guess getting the schools, the IEPs the 504s, the insurance companies, ect to recognise certain things needs some already DSM freindly diagnosis. But, IMO, the whole "autism spectrum" thing is way too wide. I've worked with autism. When I hear that diagnosis, the picture is clear, a child with communication delays, problems understanding subtle signs in nonverbal communications, odd body and hand movements, problems with relationships, usally ability to have normal relationships is seriously effectred. or even nonverbal children completely.

I've never had a Problem with "labels" before. I have a kid (and a dh) with Tourtette's Syndrome, my other kids have ADD or ADHD, but this is just too much. I need to kinda greive this. Same thing happened when I was first formally diagnosed with "Depression" I KNEW I was depressed, but being TOLD was soemthing else. Thing is SAGE is NOT Autistic or anything like it. If she were, it wouldnt be a problem with my accepting it, but, the whole "spectrum" thing is just throwing me for a loop.

On to First (or probably second) grade, and getting an other kid into therapy. Gotta love fucked up Neurological Genes........smart, but weird, that's our entire family history.

 

OH HUN that is just shocking to hear about your little one. i have a question for you... So if my child is not talking and or doesnt understand simple hand gestures plus odd body and hand movements means that these are signs of autism?????

 

((((((Maggie)))))) I felt the same way as you for a long time. I have a friend whose son is "autistic" - when she first told me that, I was like, "NO WAY! He's just like I was as a child" but the more I read and learn about it, the more I came to the realization that okay, maybe I am too...


and then jump forward about half a year....

I got mad, thinking that to treat my autistic traits would mean changing who I am, or making me be like everyone else. And refused to address the situation.

and then jump forward another year...

Jenny, my oldest, started having major behavioral issues the less often she nursed. I already knew that we both have major sensory defensiveness. Little things that don't bother anyone else can really push us over the edge. This all came to a head after she had a really bad reaction to the MMR vaccine. I remembered how I also reacted similarly to getting my shots.

anyway, I have more recently learned that doing things so that I am not so overly sensitive really helps me deal with life in general, and other people in particular. It's not about changing who I am (or who my child is) it's about helping us cope with our differences in a way that enables us to function in society. No, I don't like using labels, so I think of it more as an explanation rather than a diagnosis, a way of knowing what needs to be done. So do whatever it takes to help your little one get along, knowing that she will always be special and unique and different from other people. It's okay. It's not a disability or a disease that needs to be cured. It is a condition that does require people like us to do things differently than most other people, but there's nothing wrong with that!! Find out what helps her. For us, the gluten had to go. For others, casein is the main problem. We can't buy regular socks with seams or use perfumey soap, we can't scrub the floors with Lysol, but so what? The more we avoid those things that bother our overly sensitive bodies, the less the unavoidable irritants prevent us from getting along.

 

I work with the autistic and there is NOTHING wrong with being autistic. I found that most autistic children are the most creative people I have ever met. The problem I have with doctors and their diagnsois is that ADHD and autism are almost completely identical. I suggest you read "The Autism and ADHD Connection" and your little one may just have ADHD. I can't remember the author of the book, but the book is orange with the autism puzzle pieces on the front. I thought my nethew was autistic because he rocked, had intense hand movement (ticks), and had behavioral issues. Well he was evaluated and the doctor labeled him as having ADHD. Also, I would see a second psychologist because a lot of them love to label children and medicate them. Just my opinion. If Sage is Autistic remember she is just like any other child and never look at it as a disability. Think of her as being a creative individual. I wish you the best of luck.

 

Thank you all for your kind words. Bumble, I used to work with Autistic chldren, as well. I know, as you do, that there is nothing 'wrong' with an autism diagnosis.....if it is correct. Sage is NOT Autistic, she has Sensory Integration Disorder (what Mamaboogie was talking about, with the sensory defensiveness, the "seams in the socks" and, for Sage, problems with textures, smellls and visual "ickyness" with a lot of foods.) My point is that kids with FULL BLOWN Autism may be now getting less help, as the "Spectrum" has been widened to include these perhaps related, but not identical disorders.

Also, one of my fears is that this "Autism Spectrum" thing may impact Sage's ability to get the Gifted Programs she so badly needs. The child has been reading since she was three. I don't want the schools to go "Oh, she's autistic, no Gifted Program for her, we're spending enough money on her." (I am not saying this WILL happen, it is just a fear.) And also, I feel kinda weird that this widening of the Diagnosis, to include so many kids may limit services to kids who are truely fully autistic.

I have twp of kids with ADHD, and one with plain ADD, I am pretty familiar with the symptoms. I really don't think Sage has ADHD. She is focused, doesn't seem too distracted, can calm down when she needs to, and these are all things my ADHD kids can't do, even if they want to. Sage never rocks, chants, stares into space ect. I am just not seeing what I was trained to see as Autism or ADHD, or what I know from experience as these situations. My thing is the "Spectrum" is just TOO wide, and when it includes EVERY unusual neurological quirk, kids with actual, full blown, diagnostic criterion autism are getting short shrift. As well as kids who don't have autism being "labeled." Like I said, I NEVER had a problem with "labels" before, because I had no qualms with the Tourette's and ADHD diagnoses, as I knew those were accurate, but the whole "Spectum" thing, IMO, isn't really fair to either kids who are actually Classically Autistic OR kids who have OTHER types of Neurological Sensitivities. There needs to be an other "spectrum" as Autism is so pervasive to a child's development that it shouldnt be confused with other, even related, neurological disorders.

I think there should be some other way for the DSM to classify these things, and be more specific. It isn't the only disorder with this "overdiagnosis" issue. (Something like "Borderline Personality Disorder" is also such a broad diagnosis, that the "Classic" form of it, is really NOTHING like many people who are now being diagnosed, with really different symptoms. (OT there, but still related.)) I think the DSM NEEDS some major overhauling (I am certainly NOT alone in this) and that more research needs to be done, so that when someone gets a diagnosis, it is accurate, so that everyone who needs services will get the services they need. And so also, people who work in Education and the Medical Field, who may not be up on the newer "spectrum" inclusion won't be looking for classc "autisms" in kids who just can't stand the sound of breaks squealing, and is senitive to certain smells as their main issue, instead of being nonverbal or ecoalic, perseverative, lacking eye contact, self stim behaviors ect.

Thank you all again.

 

I was misdiagnosed with ADHD by doctors as a kid. I was very hyperactive, but I did not have attention span problems unless it was something I didn't want to be doing (like school). My parents gave me a spoonful of coffee in my milk to calm me down, and it worked. I was sent to see different behaviorists and psychologists, with little or no results because I didn't trust them and their threats of punishment just don't work on kids like I was. My behavior problems (and those of my daughter) aren't something we can just make it stop. We get so wound up that we can't control the rage rising inside us, and we have to let it out. We don't want to strike out like that, we don't want to break things or hurt ourselves, it just happens and we can't control it. I don't have a problem claiming "autism" for myself (or my kid) because I can better relate even to those very highly affected by autism than I can to "normal" people. I'm more like them than I am like you, and I know it, and that's okay. I believe, in my case, that it is a result of vaccine injury on an already highly sensitive body that created this issue. I know that's not the case with everyone.

 

Vaccines, an other issue, too. We intentionally did months of research to decide how to, and not to vaccinate the kids, after Sunshine got the Tourtette's Diagnosis. I am just thinking 'How much worse would it be?" If I had let Sage get the MMR, the Pertussis, the Hep B ect?

And, mamaboogie, a lot of therapists are much better than when you and I were kids. Sunshine has had two wonderful therapists (and two not so good ones, who didn't last long) the threat of punishment is never used in a good therapists office, ever. Consequence, yes, but never any type of punishment. That, at least, has changed for the better.

 

Sounds like she's just plain gifted to me.

i was in the "gifted" class back when i was in school. I think all but two of us had some form or combination of what they now call ADD, ADHD, and maybe even that autism spectrum" that's obviously the new catch phrase. Back then they just called us nerds, weirdos, and freaks LOL. i think it's just another step in evolution. "They" want everyone medicated, so noone is too different. Just think of the chaos that would ensue if they finally realized it's cheaper and more effective to change the public school system than to put kids outside of the norm into special programs???

 

MaggieSugar, I'm right there with you. I've worked with a few autistic kids as well, and I look at them & then my son and think "They're NOTHING alike! How can they have the same ANYTHING?" I'm having a tough time trying to find help for my lil guy too, because I say "Aspergers" and people hear "Autism." Hello??? My kid is NOT Autistic! And you can't treat him like he is... it would kill him!

I was told 2 weeks ago that the "Powers that Be" are currently working to split that goshawful autistic umbrella up into more reasonable & sensible categories. Aspergers & SID were two of the ones he speficially mentioned as needing their own categories, so hopefully we will see a change REAL soon. (((((((((hugs!!!))))))))) I'll let you know if I hear any more about this, maybe we could both help "stir the pot" up a little!
love,
mom

 

*hugs*

Hope you can get it sorted soon, Sage is so lucky to have a great mama fighting her corner.

My brother is seventeen and got his 'label' before this autism spectrum thingy started to be 'flavour of the month'. Some aspects of autism/aspergers/whatever fit him so well, but then there are other things which don't fit at all. Or they did but not so much now he's growing up; e.g it took a long time for him to figure out but now he's very good at understanding/using sarcasm.

In Britain one in 100 children are considered 'autistic'. No idea if there really is an epidemic of late, or the definition is so wide it could encompass that many people. Awareness can be a good thing, but not if it gets out of hand and kids are being incorrectly diagnosed.

 

to be considered autistic you do not have to fit every characteristic. In fact, a lot of autistic people do not have the stereotypical traits. The most stereotypical trait is the whole "no eye contact," but ALL of the autistic children that I have worked with have amazing eye contact. There was only one child that I worked with who had autism/PDD who had bad eye contact, but not all the time. If your brother had early intervention, then the characteristics that he had may have disappeared or got better. one-one-one early intervention is part of my job.

Yes, a lot of children are being misdiagnosed because of the lack of understanding of what exactly autism is. The reason the rate of autism is rising is because of our environmental conditions and that we have more of an understanding of autism than we did 10 years ago. Some of these environmental conditions are the vaccines that we give our children and mercury in some of our fish.

 

I wouldn't recommend self diagnosis (or diagnosing your own children where mental health is concerned)... if you picked up the DSMIV without training you could end up diagnosing youself with heaps of things you simply don't have. Even trained psychologists/psychiatrists cannot self diagnose.

Get professional and independent opinions before jumping to conclusions.

 

it has nothing to do with mental health. It's not a medical condition that needs to be cured. Neither I nor my children need a label to prove to the schools or anyone else that we aren't quite like everyone else or to get the special treatment and programs. I don't need a doctor telling me I can't eat gluten, I know that already. And by not eating gluten anymore, I can cope with the sensory defensiveness that has been an issue my entire life, for the first time ever. If I ever do seek professional help, it would be from an occupational therapist, not a psychiatrist or medical doctor.


And Maggie, is there a rule about inappropriate signatures? If my kids walked in right now and saw that.....

 

My basic point was about self diagnosis - don't do it. This was my basic point, I was not trying to attack you. It is about mental health.

 

in my opinion all autism is essentially sensory over and under sensitivity. the reason more severly autistic people have certain behaviours is to deal with their sensory input. SID is just the absolute mildest form of autism. from what i understand, kids with SID and no other learning issues usually learn to ways to cope with their sensitivities as they grow up. i've read blogs of SID adults and they are really no different than anyone else other than maybe a stronger dislike of crowded or loud places.

i'm not in the US but i've been on other learning disability message boards and from what i've gathered there, learning disabilities and giftedness often go hand in hand. i think it is called double exceptionalities.

my boy has SID but truthfully he does have some other autistic traits, but he is very caring, sensitive, funny and has wonderful eye contact. his IEP does help with his sensory issues with things like providing him with a quiet place to do his tests, making sure he has a seat close to the black board and it just makes the adults who work with him aware that if he reacts a little funny in situations it may be a sensory thing.

if sage isn't bothered by sensory issues at school i can see how it would seem silly to set up an IEP and all the other stuff that goes along with it, but hey maybe there will be some benefits. if it affected her ability to get into the gifted program, you'll definately have to make some noise about that! but she should get in.

my boy also doesn't really fit any real diagnosis other than SID (although he does have some traits definately more than sage by the sounds of it) but this seems to be getting pretty common doesn't it? these mild-almost-sort of-seems a little like autism. is it over diagnosis, is it completely genetic (niki's dad definately has sensory issues too) is it environmental?

sorry for this being so long and probably not making much sense, it's an issue close to my heart though.

kathy

 

sage-phoenix, i wonder what high school was like for your brother? i worry about niki going to high school. he is so naive and just believes everything you tell him. i worry about him being used by bad kids. i should probably homeschool him! how did your brother cope?

kathy

 

I agree. It is ALL about being so sensitive to certain things that it inhibits your ability to function. It's the person who is so sensitive to certain chemicals that regular laundry detergent in their sheets prevents them from getting enough sleep. Then they get up in the morning, after not having had enough rest, and eat some crap cereal full of sugar and wheat and doused in toxic cow milk. Over time, all those little things start to add up. Their bodies rebel and it affects their minds in a very big way. It makes them angry, but they don't know why. It often makes them strike out, breaking things, hurting people, hurting themselves. It makes them appear crazy to other people, but it is not anything a psychiatrist can fix, it isn't about mental health, it's a physiological, neurological and autoimmune reaction to certain stimuli. The world we live in is a very poisonous place, and there will continue to be increasing numbers of overly sensitive people who have a very hard time living here.

 

He did get bullied a bit, other kids taking advantage of his good nature.
For the most part though he was content and did OK. He managed to make friends that would look out for him.
It was a bit hit and miss getting the suppourt he needed there, the department/staff for 'special needs' was excellent but a couple of the other teachers just didn't get it.

I think the most important thing is to get really involved and keep communication open between your family and the school. Also between you and Niki so he feels comfortable discussing any issues and knowing they'll be sorted.

Good luck

 

THANK GOD!!!! I know this is needed, and the OT who we think will be working with Sage thinks so, too.

I know, about the eye contact thing, the kids I worked with would only make eye contact (and usually any physical contact) on THEIR terms, some could make good eye contact, but not in consistant situations, say a learning situation. Sage STARED at the OB, before her entire body was born and looked around the entire operating room, making contact with every body. The doc said it was amazing, in his words, "A really cool birth, usually their eyes are all squished up, but Sage just took us all head on and looked like she was about to say something. Really cool kid."

MY main concern is the eating. It is getting to the point where I am concerned about her nutritional status. I have FOUR kids, and never had a single eating problem. We have GOOD food in our house, fruits, vegetables, good whole grains, healthy proteins.....and Sage will only eat about 4 things, all of them White, and none too healthy. I've done ALL the things one is supposed to do to get kids "interested" in food. We grow our own food, Sage LOVES to garden, she helps cook, (as long as nothing "Yucky" gets on her hands) she sets the table, even helps plan menus, but WON'T eat much of anything except rice, pasta, bread, (Oh God) chicken nuggets (which I NEVER had in the house before, but the kid won't EAT much of anything else) I refuse to have Hot Dogs in the house, (although, she will eat them, sometimes, because you don't have to chew them, but won't eat the Tofu Pups......sigh) and some cheese. NOT a healthy diet by anyone's standards. My reason for getting her evaluated is so that she can enjoy a variety of healthy foods, and not get nutrition deficeincies. We do use Rainbow Light vitamins, but that isn't food, and I am NOT going to put her on Pediasure......

Myself and Sunshine probably have milder SND, can't stand certain sounds, textures, smells ect. But, they aren't threatening our health. I think Sage's is.

Thank you all for you support. I'll let you know how things are going.

 

Oh, and she will eat Organic, fruit only Stretch Island Fruit Leather. So, she lives on those. *sigh* We're hoping things will get better, we are working on "heavy work" requirements, and "Pressure" strategies, like having her PUSH our hands really hard, when she feels like she is overstimulated. Bear found an article about "weight vests" but we don''t want to invest in one, unless it would be what this individual child needs.)

We may not get into Easter Seals until the end of August, so we're trying what we can at home, until then. (Sage" "I'm not going!" )

Oh, one more thing, just read a new book about the subject. Related Disorders: Migraine, OCD, Tourette's Syndrome.......we're doomed.........doomed (what I mean is our familes are rife with ALL these conditions. Smart, but weird, that's us.)

Thank you all again.