Fully excpect to join this diagnosis soon :-(

[Mayzoo]

Hi,

My daughter has a slew of symptom not related to the signature diagnosis. I have prepared my hubby for the fact that "sweetie" will probably be receiving one of the many autism diagnosis when we go see a pedi neurosurgeon specialist for her chiari. I wanted to get ya'lls opinion so I might be more prepared for what we are going to hear. She fits the "Diagnostic guidelines for Autism." I have done some research. I have worked in the medical field for 16 years. I have only begun working indirectly with autistic children and their parents within the last two years. So here are her symptoms that I can see even as a biased parent (We don't discourage these "symptoms"):

* She soothes herself by touching her index finger to her thumb as if doing shadow puppets.
* She "squeals" in a high pitch tone when she is in a low-moderate anxiety situation.
* She has either an intense fear or intense giggles when presented with load noises.
* She is 4.5yrs old and speaks at a 24 mo old level (hearing test normal, speech therapy not too helpful).
*She still regularly puts objects in her mouth that she should not (we do discourage this one.)
*She lines up coins, shells, toys, block, or most objects into linear lines as her first approach to these objects...then may "play with them" later.
* She shreds paper, or wipies in to small pieces and keeps them in stacks.
* She can spend hours contentedly transferring objects from one container to another--she does not mind interruptions, but she will not tolerate an object being added that does not "belong"..she removes it from the bunch--every time.
* Notices even the smallest of changes made in the house (move something).
* At an elaborate, but quaint local park--she spends most her time watching the other children, or dropping the surface rocks from one hand to the other--she never plays with the other children...but she will pick out one child and follow/watch that child.

* She does not understand how to answer yes or no questions. IE: Ask her do you want juice or milk and you get a one word answer....ask her do you want a bath, and you get no answer.
* Repeats random and timely inappropriate phrases. Like mommy and her at the store....she will say "Daddy be careful", or "Doggie don't bite"
*Can play alone contentedly for hours.
*does not play w/other children "normally"--she mostly watches them and/or plays on the outskirts of the activity.

She has never been in day care. Her other medical conditions and our local school district prevent her from attending public school at this time. Verbal delays are common with two of her three major neurological conditions.

She is very bright--she came into the living room and found a shoe on the table that our dog had chewed up. We have three dogs, only one chews on items. She picked up the shoe...assessed it...shook her head and just said "Poncho"--the dog's name She can solve complex spatial issues, yet does not know her ABC's yet. She does smile/laugh and seem to understand humor in real life and on television. She understands our moods all too well. She does seem to have some issues with eye contact; however, this is not consistent.

Sorry this is SO long---any input for those who made it all the way through :) would be greatly appriciated.

Mayzoo

[Isabelle]

Welcome! For I've read your dd has a bright future, I can see a lot of positive things going for her. She might be a matematician like Mooseberg (sp). Take her positives and run with them. About not answering some questions add to her No and Yes answers "I don't know" and "Surprise me" with her sense of humour she will get it with no problem. Make it a game of any other difficulties and see if she responds to singing and music. If my son is in foul mood or "anxious" singing lighten his mood and brings a smile. For instance "Singing in the rain" showering and shaving his bear. "You are my sunshine" for cloudy days. Some histrionics helps a lot. My son is 32.

Other parents of young children will welcome you soon.

[Mayzoo]

Music is a definate love of hers. It was all I could ever use to get to calm her down during our hours of colic screaming. We must have looked histerical---dancing fast and furious to Christian Baby songs. If I stopped--she cried. I lost a lot of weight while she had colic :) .

I have a great since of humor about all things life brings. If you can't laugh at what life throws at you---life will near kill ya :p !!

She is already very calm in the face of most storms...and hugs the nurses after they hurt her for a procedure. She is a gentle and beautiful soul (I am not one bit biased here!!)

Thanks for the fast reply.

Mayzoo

[peglem]

I'm curious as to why you think the symptoms are not related to the signature conditions? There is someone on this board who is somewhat of an expert @ ACM and whose daughter's autism improved dramatically w/ decompression surgery.(Keggy) She'll probably respond to this when she gets a chance. But, autism, really is a group of behaviors of neurological etiology, that cannot be pinned on another disorder. If your child has known neurological abnormalities, why could they not be related? This whole autism diagnosis thing is entirely too confusing (at least to me and I've got a 12 YO daughter with autism) My opinion: your child has a lot of autistic characteristics, but I would not rush into an autism dx if there may be a plausible, tangible cause for her behaviors. A lot of my daughters medical problems were overlooked and not investigated or addressed because they were thought to be just a part of her autism.

[Mayzoo]

We are having decompression surgery on the 20th of November, and I am hopeful to see a whole slew of symptoms helped or relieved (most especially her chronic pain). I know ACM kids, and autism seem to go together. Autism, so it appears from my research, cannot happen without some issue with the cerebellum. Of course she has many issues with her cerebellum. She also has some wicked birth trauma issues that seem to have lead to all the neurologic conditions she has now (but that is another issue, and a whole other long post :) .) I have researched, and been on countless boards for ACM--the name Mayzoo is everywhere for ACM, AC, Syringiomylia, teethered cord :D I may even know Keggy by another name:) ). Post surgery, I see some kids improve..some stay the same...some regress/worsen. I am a very proactive/advocating parent. She has already, at age 3, been told she has autistic traits, just not enough from any one category to give a diagnosis.

I am not eager for a diagnosis per se, I am eager to find resources to be better able to reach my daughter, and allow her to brake the speech barrier if possible, and if that requires a diagnosis to give me the ability to find those resources---so be it. She is so frustrated when daddy and I just don't iunderstand her, and she is old enough to see other kids, know she is different, and she knows it is not supposed to be this hard.

I look at diagnosis, now, a little differently than a lot of people--I look at them as a great tool to help me help her. I don't want to sit in the dark or denial, at the cost of her quality of life now, and in her bright future. Other than them being a great tool---that day of diagnosis is the same as the day before. My child is no different. Learning that diagnosis did not change her a bit--she is still my sweet angel. All the new information did was give me better tools to work with, to help her achieve the most greatness and happiness in life she can acheive.

If I don't already know Keggy, I am looking forward to meeting her. I love hearing possitive recovery stories, and she may be able to help me tons----who knows maybe I can help her a bit.

[peglem]

I don't see an autism dx as devastating, and you're absolutely right- it doesn't change who she is one bit. You have an excellent handle on what your child's strengths and needs are. I see no reason why her needs could/would not be addressed regardless of an autism dx. The dx is a double edged sword-Keep in mind this is my opinion, based on my biases. It has come to light recently that my daughter has been suffereing from some medical problems that were not addressed because they seemed to be explained by her autism dx(strep/PANDAS type stuff)...One recent example: In August, my daughter developed severe photophobia w/ apparently migraine headaches, maybe seizures. She was given a referral to a neurologist. When the neuro department called to arrange an appointment- they wanted to give me a February appt. I got upset and asked how they expect my daughter to just live with this for that long before they can check her out. They said, oh, we didn't know she was having headaches- the dx code just says developmental delays( apparently these can wait longer?). So she gave me a december appointment-still too long, but all they had. Two years ago, she had a very abnormal EEG, which was deemed "normal" considering her dx. These are just a few examples. I don't see how an autism dx will help your child get any more services than she would already get, based on her current dx. I'm not denying that my daughter is autistic, but I'm not sure what that even means anymore. Near as I can figure, its a way to explain away neurological problems that they have no other explanation for. But, it doesn't really explain anything.
I'm not trying to talk you out of getting an autism dx- just want you to see that there are 2 sides to the label. Also, education-wise, you sometimes get instructors or aids who use it as an excuse for lack of progress.

[Mayzoo]

Oh, I have so been there with the "this is because of this dx...." or that behavior has NOTHING to do with her dx's. Docs see the kidos for a couple minutes every couple months...we see them day in and day out, but they discount the parent's views/opinions.

So far, her current pedi neuro is treating her for frontal lobe disorder. Her EEG that he did in his own office disproved his strong held opinion---yet he won't let that go. He says none of her symptoms are related to any of her medically proven diagnosis's :eek: . His opiniion is she is not in pain---she is having temper tantrums, and he will not watch the videos. We just use him for medication for her naturopathic pain now.

Her previous pedi Neuro said "yes she has many complex symptoms--but none are related to her diagnosis's." When asked what is causing her severe pain---his answer is "not the current diagnosis'"

Her first neurosurgeon was eager to do decompression to resolve her seizures---which she does not have. She has never had a seizure.

The second neurosurgeon states yes she is very symptomatic, and at least some of her problems are related to the chiari...especially her pain. He wants to know why no one has done something surgery wise for her up to this point. She was DX'd, and symptomatic at 28 mo, and is now 4.5yrs with far more prominent, and diverse symptoms.

So, you can probably see why we are driving almost a 1000 miles to go see a pedi neurosurgeon specialist in chiari/syrinx (Dr. David Frim). We are eager to hear is opinion of the whole picture. We see him on the 2nd of Nov.

I am pretty ignorant about autism in general at this point. Primarily--I need some help in finding ways to break through her verbal barriers. She is so delayed, we are seeing a great deal of frustration beginning to surface. If I can get help/knowledge in how to break this one barrier would make her life, and ours so much more manageable. I have been on the speech delay boards as well, and so far nothing is really turning on that light in her head (or mine for that matter.) I know we are going to have to meet each other somewhere in the middle---I don't expect that she will suddenly reach her speech potential in a short time frame. We have tried sign language with some success--but I don't believe that will be a long term solution. I don't know anyone else in her life that knows any sign language---and mine in barely passable at even her level.

Mainly I guess I just really need ideas from anyone who has found programs, groups, techniques, anything that has helped with the speech barrier that I could try. I know every child is different--but I am open to just about any suggestions now. I have heard both great stories of verbal delay resolution after decompression, and I have heard also no improvement to some regression.

Thanks for all the replies. I really appriciate all the time anyone takes, and the information is truely invaluable to me.

[Isabelle]

As you say every child dx with "autism" is different from the next one and while getting that dx helps your child to get services, as Peglem says clouds the vision of the doctors. My son is 32 and everytime that he gets sick I have to call 911 and the ER dr wants him in on Zyprexa and to be admitted. Never fails! :mad:

[paulmoosberg]

i just love to think in pictures and numbers. i wouldn't say i am a mathematician cause i haven't gone to a real colledge. i went to a techy college for computers before i knew i was autistic. now that i know and i know i can spend emence hours and thoughts on any given subject that entertains me, i have been re learning my math and high school courses from computer software. i think i will go to college for physics and math, since those are the things i like to think about on my spare time, but i wouldn't go as far to say that i am a mathematician. i just like thinking in math at times, thats all.

as far as the symtoms, i am sorry to say that i can relate almost all of the given characteristics to myself or little mike (severe autistic friend). like the hand thing, oh my gosh!! little mike loves to touch his first finger or secnond finger to his thumb and hold it there even when he is talking or walking around. it might be related to pressure like how i like to grind my teeth, he likes the feeliing of his fingers together like that?

i use to break apart styrophome (totally not spelled right) and group them in sets when i was 4 or 5. i also learned pi out to 125 places when i was 10. i would imagine that your kid has fairly good remembering skills, but only on the things that bring enjoyment? i am just guessing cause it seems most autistics have an emence amount of knowledge on the things they enjoy, like little mike plays who wants to be a millionaire and remembers all of the questions and answers and even remembers if he answer a question wrong before, ON EVERY QUESTION!!

working on short spurt recognition with words. i would say to try to work with short answers and try to phrase questions the exact same. try to let him relate his answers and it will be easier to relate his answers if you are asking him the same phrased question. may not work quickly but in the long term effect it may give results that you desire. also try to make things stand out in a way that will get the childs attention. little mike likes who wants to be a millionaire, so when i ask him a question and he answers i like to ask him if that is his final answer (like in the game). this gets his attention quick because it is something he is familiar with and he enjoys very much.

does the kid watch a lot of tv? or have a favorite character or favorite toy? maybe you can work on getting attention by associating the question or interactions with something of known enjoyment like a special kind of toy or tv show or character in a book. i know i never really liked reading books, but i love listening to them on tape (turns out so does little mike? not sure if there is a corrilation there or not?). so a book may not be the best answer, but you get the idea i am saying? focus on how to attract the kid to interact with things you know the child enjoys and has fun with.

i guess i am done rambling for now. thanks for listening.