Living with Authism Spectrum

[rainier]

You know Authism Spectrum is a difficult disorder to have. But is also a catch all term. I wish if physicains were going to tell you you have they would at least specifizee which one you have. So you are not playing guessing games. Can drive you nuts.

What I know is that regardless of which one you have they are all tough. But I think that it is even harder when people never even heard of your disorder; like say how many people have heard of Retts Syndrome. It is part of the sprectrum.

And I have noticed there seem to be all these support groups for families with authistic children. Well that is all great but what about the person with the disorder where are the support groups for them. Do people really think it is any easier for the person with the disorder.

Maybe sometimes it is but I don't think so. I think that it is just as hard if not harder on them. They are not understood and they know it. They feel like outcasts and often times become loners. This disorder can make a child who love to be social, unsocial.

Hm but most of them don't want to be social they are into things; and way I see it they are lucky if they are. Because people unlike things judge you. Unfornately at least one of the spectrum disorders leaves the child wanting social interaction. They are timid often times don't communicate well but they want to. Who wants such a disorder. Imagine the hurt involved.

It is much easier to understand things than people. And I tell you what I would not wish this disorder on my worst enemy; it is the pits to live with.

 

[Nobility]

Aww Hun
I'm honestly not sure what I can do to ease the struggle you are going through, but I am here if you just want to talk.

 

[EdmundPevensie]

Rainier:

A lot of the reason doctors don't give a lot of specifics on AS is that they don't always have a lot of specifics about it themselves. I was diagnosed as hyperactive, then manic-depressive, then just "difficult" ... and at age 37, finally figured out by myself that I most likely had Asperger's! So they may not know as much as you give them credit for. (As Mama always said, "do not attribute to malice what can more easily be put down to stupidity." ;-D )

Also, I've found the same thing about support groups for parents of AS kids vs. those with AS themselves. I think that's largely because AS is fairly new as a common diagnosis (see previous paragraph), so the ones the MDs are finding tend to be younger. Also, it is more easily dealt with when discovered pre-adolescence. Having said that, there are adult AS support groups out there -- just takes a little more searching is all. By your user name, I'd intuit that you live in the Seattle area; I'd be very surprised if there wasn't a couple of adult AS groups meeting in a metropolitan area of that size. Keep hunting, I say, and keep us posted on your progress!

 

[Reptoid]

Maybe sometimes it is but I don't think so. I think that it is just as hard if not harder on them. They are not understood and they know it. They feel like outcasts and often times become loners. This disorder can make a child who love to be social, unsocial.

Hm but most of them don't want to be social they are into things; and way I see it they are lucky if they are. Because people unlike things judge you. Unfornately at least one of the spectrum disorders leaves the child wanting social interaction. They are timid often times don't communicate well but they want to. Who wants such a disorder. Imagine the hurt involved.

It is much easier to understand things than people. And I tell you what I would not wish this disorder on my worst enemy; it is the pits to live with.

You bring up good points about autistic people being judged. My entire life I've heard or read professionals spouting that people on the spectrum have no empathy which prevents them from understanding others. This has always seemed foolish to me as those of us with AS can be very humanitarian and loving toward animals and gladly receive their company. I've come to reject the notion that people with AS are the subset of humanity completely lacking in empathy since it seems like its always the autistic person who has to make all of the effort to understand others and to step into an alien social world they must learn very mechanically. Despite neurotypicals believing themselves so empathetic, very few people try to empathize with those on the spectrum and to understand how the autist sees the world. People just instead label the autistic as completely non-empathetic or somehow disabled/inferior because the neurotypical is either incapable or unwilling to see that the autistic person thinks differently. I had been diagnosed with AS when in fourth grade because of my obsessive interests and "weird" habits like always rocking or shaking my arms; I used to struggle horribly with fitting in, but now I just don't give a damn. The planet is being ruined and I hope humanity goes down with it.

 

[rainier]

The way I see it is that authism is hard enough to deal with. The least the physicians could do is give a specific diagnosis if they can't diagnosis me exactly then don't put out there I have authism. As long as I thought it was just something to do with childhood epilepsy I was fine. Now they inserted a whole bunch of fear; and they don't want to give me the diagnosis so it seems.

I am pretty smart though especially since according to them I was mentally retarded. Wow puberty changed everything didn't it Whatever. I can go from being mentally retard to just below average intelligence all in two years without any special classes or anything. Now is not that something!

I am sick of this whole thing already if they can not diagnosis me; don't put it out there where I can find out. But I am pretty good at diagnosising myself; I have never been wrong yet, and I suspect I know which one of the disorders it is. I can not figure out why the doctors resisting getting the records to rule for sure or rule out. Geesh so tough. All that work.

I suspect it is Rett Syndrome which most people have never even heard of. I dont remember being a baby and toddler imagine that who does that the stuff I don't know. What I do know is what the records from the doctors that I have say from about the time I was six onward. And it just to coinsidental that so many of the supportive critea are there. I do move my arms around and I sure did at two. What does it prove that overcame my loss of speach and all that fact is there. Most authistic disorder kick in around two or three
Rett's kicks in at about one and usually with the seizures. Now is not the consqental that is exactly when it kicked in.

I have every reason to scared now. Because if I have Retts I could lose my mobility and I having all this back pain some days I can barely get out of bed. And they don't want to take the time to find out. Dog gone it psychologically I can not take it. I need the diagnosis ruled for sure or out. Because medications can compromise Retts and make it worse; the combination with some drugs could cause possible death. And here they are not willing to let me know.

What I am suppose to go through life freaked out what could happen because unconventient for the doctors to allow me to know for sure what I do and don't have. If they are not willing to give me a specific diagnosis they should just let me think it was the epilepsy. Psychological that would been better for me. If they gave me the wrong medicine and I died well now I would just be dead. I prefer that over living like this. I am very angry that I can not seem to get my answer. Psychologically I need one now; most of the fear about it am having is not knowing. If I knew I could deal with it one way or the other. I want to know what is going on if I am just for some reason having these odd spells now and it not connected or if it is and it just gone in to the fourth stage. Of course it would be at the beginning of that stage. I feel like they are avoiding giving my diagnosis. On their part it is malice because you don't do this to something with authism spectrum; you dont give anyone unneeded stress, grief, and fear. That is not what medical field is for; suppose to be about healing. Is not misforuate for me that I have to live with this. If they are going to give me fear about it least they can do is give a diagnosis. I am not willing to accept a unnamed disorder; I am willing to accept a diagnosis different than what I think it is. Although whether or not that is what it is the symptoms are similar regardless. How do they expect me to function now they stirred up all this fear?

Only thing that is for sure is in the next life they will be no authism. Now won't that be something. I don't understand how authism not get in God's way; seems to get the way with everything else.

 

[LadyDeflora]

i think it is easier being a child with one of these disorders than an adult...

at age five after the intervention of a group that acted on behalf of parents that had children on the exceptional list, we were able to have our daughter evaluated...they gave her a pdd/nos diagnosis. It allowed her to receive help being a recognized disability, but at that age she was too young to test properly. The only aspect that kept her from a clear defined autistic diagnosis was her desire for human interaction, as a kindergarden teacher described. "it's amazing watching her in her own world and wonderful when she invites you in to play with her."

we just recently had her reevaluated, the doctor again noted the difficulties in testing her due to her inability to concentrate, she started out with a suspicion of tourettes, but seems to agree that it's more than likely a form of asperger's.

it was nice that they were able to explain the reason why by standard iq tests she was retarded, but academically proved that incorrect, her mind was much more visually perceptive, she would never do well on standardized intelligence tests, that rely on the ability of recall...she's not standard, but is the only ten year old i know that can try to pull off a joke using the scientific names of prehistoric crustaceans, able to rattle off the differences between a variety of carnivores, omnivores and herbavores, all from reading any and all books she can.

her reading habits left a possible suggestion of hyperlexia, but she has too many other, aspects to narrow it down, that simply.

the problem with this spectrum i think is that it has no textbook definition or understanding, so the doctors are left comparing the behaviors they test and observe, to established diagnosisis and then comparing that to how the subject is or is not like those previously tested, established with a clear diagnosis, the doctor who did her reevaluation even admitted that she'd have to speak with a collegue to completely understand the results of her testing, comparing what she found with what was discovered about others who've performed equally on the same tests, and at the same age.

but contrary to her having difficulties with her peers, it's amazing what the school is doing and has done in keeping her in as normal an environment as they can, assuring she's able to grow with other children learning from them, yet understood as being different; showing how to accept her, rather than alienate her.

it's amazing how many kids are fond of her, even if they don't understand why she is how she is, they know she's different and are fascinated by that fact.
the more understanding there is for this amazingly wide spectrum of pervasive developmental disabilities, the easier it'll be to understand, diagnose and educate. growing angry at ignorance doesn't resolve anything, but demonstrating what you do know and helping others understand what it's like, can change everything.

 

[rainier]

My problem is that I feel that they are unnecessarily freaking me out. If I truly have Rett Syndrome it needs to be resolved now; because certain medication make it worse. So if I have PPD-NOS fine that cool now I don't have to be worried about put on blood pressure medication. More than anything I scared that because they refuse me my diagnosis I dont know what to think when they put me on medications. If what I have is not Retts then maybe I will not lose my mobility; maybe scared about something won't even happen. I just want ruled one way or the other. If all they accomplish is telling me I don't have Rett then that alone will relieve a lot of anxiety; and I don't understand what is so hard about looking at the records and figuring it out.
Psychologically I am a mess now over it and have been for a year. All I want is to what it is so I can deal with it and not have unnecessary worry. Yeah I am an adult but I honestly think it is easier now than it was when I was a teenager.
They could not even tell me as a child what I had. And fact is that they declared me mentally retarded. I suppose puberty change everything Not sure how though all I know is in less than two years with no extra help I went from mentally retarded to a normal IQ
Maybe I did not; Washington state was measuring my school work
California I dont know what they measured. You ask me Washington state is right.

Rett is relatively new was not commonly known in the eighties and so that could very well be my diagnosis. Not that they wrongly diagnosis but that they did know of it to know that is exactly what I have. If you have a patient saying I think that I may have this ok you owe it to them to relieve their fears and tell them one way or the other. That is all I am asking I think I have Rett Syndrome. I did the research. I looked through the medical records I have. I did comparison and contrast. I did what I knew to do. And I am not a doctor but I do have some medical training and this is enough to be concerned about. It would put my mind at ease if they would just tell me.

The thing is doctors are suppose to know more than the patient. Regardless of my training as CNA that really should not make me know more than a doctor. I don't expect average people to understand me; I am not understood by own family. You know I can live with that. It hurt tremendously to feel rejected but it more understandable than having doctor refuse me a dignosis. If they can not tell me for sure which one of the disorder it is could not they at least rule out Rett Syndrome and tell me if it is that; for my mental health could not they relieve my fears.

Honestly it is most likely is Rett's though I open to them telling me it is not. I will tell you why I say so most authistic disorders are found mainly in boys Retts is almost exclusively in girls. Most authisc disorders start in the toddler years Rett's start in infantcy. I was still an infant. Most authic disorders the child wants nothing to do with other people; with Rett she generally loves being around people they are rather socialable. Most authistic disorders have nothing to do with epilepsy; Epilepsy is common in people with Rett Syndrome and generally the onset of the Retts is accompanied by the time the seizure begin. That was true of me. Don't know that alone is enough to make me wonder. She loses her ability to walk and to speak I sure in the world did. I was just one determined little girl I wanted to walk and I wanted to talk and so I did. It is matter of severity as well. Retts rather varies it is a matter of what genes are turned on and off. So maybe puberty turns off some genes and on other genes; that is more than I know. What I do know is I am not mentally retarded anymore.
Rett Syndrome still is not commonly known of. I would like to educate people about it; but I don't feel I should have to educate my doctor. The age of onset, and the symptoms are just too close for me not to be concerned about accompany that with the fact that stage four of this disorder leads to in-mobility and I am having increasing trouble with spine at an age where I should not having problems is enough to concern me. I actually wonder how much about the disorder she knows. But I dont want to appear like a know it all. She is the neurologist she should know. But since I am talking about a rare disorder and it is rather rare, I can not but wonder. I also think she is not taking the necessary steps to figure it out
seems she is putting into less than I did. A normal CT scan now does not prove a thing. All it proves is I dont have brain damage shocking considering I already knew that. If I had brain damage I would know it was not Rett Syndrome. That would prove it is not Retts sheesh.

The reason it is so important to me; is that I want it to be recorded so that there is not a problem later down the road with a prescription or something or other. And if that is not what I have and they can tell me that now I dont have to be afraid I can go on the high blood pressure meds with no concern. Mentally that is important to me to be able to trust what my doctor is giving me is not making things worse.

Since it was so little known when I was at that age and never looked at really I think it would benefitual for them to look at the possibility and tell me one way or the other. That is difference of expectation from the general public and the medical professionals; I expect the public to know less than I do, about something I believe I have; and I expect the physicians to know more than I do about their scope of practice.

 

[gomatadors]

Ranier and Reptoid,

Try not to allow your disability to get you down. Instead look to God for help. Although we may not understand why God allowed us to have our disability (I have two disabilities that few people understand) we know that God has a purpose for our lives.
I know that it is difficult to deal with and at times we will get discouraged. But please persevere.
I would rather spend my time away from people. However, then I would be of little use to God. Therefore, I spend as much time as possible being around people. My failures are numerous. But I pick myself up again and continue. I believe that God will use my disabilities to help make this world a slightly better place. And most importantly God will be glorified.

 

[drifter5]

I have aspergers and i praise The Lord for so graciously using my disability to bring glory to His most wonderful Name. God' s power is made perfect in my weakness. Since God has graciously saved me He has used my directness in a positive way in witnessing. God has graciously given me the boldness and the right words to say by The Holy Spirit. All glory to His most wonderful Name. God loves us all so so much .Praise His Holy Name !

 

[LadyDeflora]

we had my daughter reevaluated, the specialist gave her aspergers as a secondary affect to her behavior, suggesting that it was tourretts responsible for much of the behavior that no one could pin point, why...the great news is it's defintily not adhd and we no longer have to have her on the medication for that, treating her for tourettes should have a better reaction; she's just too verbally expressive to be strictly asperger's as the psychologist pointed out.

the main issue with my daughter is an inactive right frontal lobe, for ten years no one had any idea what was going on with her, and now that they are knowing more about what is an autism spectrum disorder and is not, i'm hoping it'll be much easier for others to get specific help rather than treating the behavior, unable to pinpoint it's source.

i to wonder what God has planned for these children, and have no clue why He chose me to raise her...but i'm grateful He made the choice, i just wonder if sometimes i was the right choice?

 

[TeslaZ]

I so hear you. My son was given this disorder:
Childhood Disintergrative Disorder.
Big help. Yes,a type of Autism. I'm at a loss at times as to who to send him to and what will be his future progress. Docs are confused by him.