parents of children with ASD/PDD-NOS/SID: help please!

[keypooh90]

My 14 year old dd is displaying what I think are ASD tendecies. They are:
hates being hugged/touched
hates loud noises: fireworks,horns,sirens,etc., but also hates normal noises: sound of chewing gum,talking,music,smacking,etc. If the person/thing making the noise wont stop, she has a meltdown in which she cleches her fists,yells,hits,crys,bites,and tells the person to Shut Up!
She has a meltdown if we dont make a list/schdule of things to do and dont follow it to a t.
She is reluctant to try new things, fearful of new situations,shy,doesnt want me to leave er, doesnt make friends easily.

Please tell me if She has a disorder or is simply BAD. I am at my wits end. thanks

 

[gigi1313]

don't know the answer to your question, but as the mom of an ADD/SID boy, i have a few more questions... has she always been like this or are these new tendencies? have you tried any diet changes, perhaps it is allergy related (you should see ds on yellow lake #5! ugh!)... could it be hormonal? does she have any other dx that could "piggyback" or mimic or intensify her current "issues?"

 

[SueM in MN]

Agreeing with gigi

If these are new things, it's probably not something like Aspergers and might be hormonal, diet or any number of other things related.
If she's always been like this, then it's a different story.

 

[HopperFan]

I have a child w/issues including severe developmental delay. He has developed many of the same symptons except he can not express himself (severe speech impairment) and while we do not do schedules for him, have noticed the slightest change is upsetting as well. We can count the "meltdowns" with us in the last couple years, but just since school has started it is happening at school almost 1-2 times per week. He is always stressed and anticipating the worse will happen. He is stricken with fear over mundane things to us.

What we have pinpointed it to is NOISE - yes the fireworks and sirens are awful - but also human noise is very offensive to him. Our pedia has put us in contact with a specialized group for disabled children to pursue a sound desensitization program. We begin our appts this week for complete evaluations and one thing being looked at is hyperacusis. It is something that comes on suddenly or over a period of time. My ds can not express to us what is happening or how he feels, but it sounds like your dd is able. I would look online at this condition and see if it may be something worth pursuing.

Good Luck !

 

[Ambassador]

Perhaps you should discuss your observations with your child's doctor, and have an evaluation by a professional if recommended. With an accurate diagnosis comes an effective prognosis for helping your daughter.

 

[s&k'smom]

I agree with Ambassador, go straight to your pediatrician and have them recommend a specialist to do an evaluation. That way the specialist can also help you with recommendations etc. Good luck.

 

[keypooh90]

To answer your questions:

I don't think it is allergy/ diet related as she hasn't tried new things. Could be hormonal, but I doubt it. As for other disorders, she was dxd OCD and SAD(social anxiety disorder) in 2001 and was put on Paxil and Zoloft. She also receives BMT(behavior management therapy) twice a week to keep these disorders at bay. So maybe she needs her medicine adjusted. Either way Ill take her to the ped soon. Thanks

 

[sn00zn]

keypooh,
Those are ASD tendencies, but remember no one can make a diagnosis over an internet forum! Also, the fact that this seems to be recent would make me think it's not likely ASD, but I'm not a professional. You may want to check the "Diagnosing Aspergers" thread in this same forum where myself and others made some suggestions about finding the right kind of practicioner. The same advice would apply to other ASD disorders as well as Aspergers. One more thing, you should check to see if your school district is responsible for any evaluations (whether the problem is ASD or something else entirely). Talk to the school counselor and if you don't feel you are getting straight answers find an advocate. If there is group of parents of special needs kids in your city or region, they should be able to point you in the right direction.

snoozn

 

[MadisonMom]

Your local chapter of the Autism Society of America may also have some ideas of local practioners who can make a diagnosis. You can find the local website from the ASA website: http://www.autism-society.org/

 

[spotdog]

I can only sympathize with both you and your daughter for what you are coping with right now.

I am now a middle aged woman who has struggled since late adolescence/early adulthood with "anxiety based" disorders which have been diagnosed and re-diagnosed as everything from Complex Partial Seizure Disorder to Bi-Polar Rapid Cycling.

I have finally (after 10 years on SS disability) been self-supporting for the past 7 years as a stagehand. Life has not been smooth.

I have what will probably be a lifelong "dis"ability which is currently diagnosed as Panic Disorder/General Anxiety Disorder with Recurring Major Depression. I believe this means no one(including myself) really knows what causes my sensitivity to stress and some daily life situations. I can sympathize with Hyperacousis, which was my early reaction to Depakote, which has been replaced for me with newer meds.

I have finally found medication and therapy which usually works for me. I have owned up to my sensitivities and the rare obnoxious behavior which accompanies it. (I no longer scream, hit or bite myself or others). I prefer to remove myself, in the event of rare "meltdowns", from public view. I have found that the Disney First Aid facilities employees, if my hotel room is not readily at hand, are very competant at giving me a cot and some space to control my crying and hyperventilation on my own.

Now that I've come out of the closet and you all know why I frequent this board. I just want to encourage parents to know that some mental/neurological problems are not their own or anyone else's fault. Some people just get "wired" with sensitivities for reasons no one currently understands. My mother has had to endure more than any mother should be expected to endure, but now we both understand this.

My hope is that there is not a hereditary link and my neices and nephews will never have to endure what I have gone through.

I have high respect for Disney. I seems that they bend over backwards to allow all people to enjoy their parks and vacation facilities.

I would say to all parents of challenged children to not give up on encouraging your special children to experience all of the opportunities available to them. In the end, if they are capable, they will thank you. What was not medically possible 20 years ago is now happening every day. 20 years from now your child's opportunities may be endless.

Never give up.

 

[missypie]

Originally posted by keypooh90
My 14 year old dd is displaying what I think are ASD tendecies. They are:
hates being hugged/touched
hates loud noises: fireworks,horns,sirens,etc., but also hates normal noises: sound of chewing gum,talking,music,smacking,etc. If the person/thing making the noise wont stop, she has a meltdown in which she cleches her fists,yells,hits,crys,bites,and tells the person to Shut Up!
She has a meltdown if we dont make a list/schdule of things to do and dont follow it to a t.
She is reluctant to try new things, fearful of new situations,shy,doesnt want me to leave er, doesnt make friends easily.

Please tell me if She has a disorder or is simply BAD. I am at my wits end. thanks

Asperger's is most common in males and is underdiagnosed in females because the symptoms can be different. If you can afford it, take your DD to a private psychologist for testing. Don't leave it to the school district; public schools have a great motivation to find that there is no problem - they want to provide as few special services as possible, and you can't really blame them, given budget constraints.

What helped our family life a lot is hearing that with an Aspie, "what is begun must be completed." We had been baffled at why DS would flip out when we turned off the TV...he HAD to see the end of his show or commercial. Now that we "get it" we warn him at the beginning of a TV if he will not be able to see the whole thing; unless there is a fire in the house, we can always wait until a commercial is over to turn off the TV.