Aspbergers sounds like ds. Where to begin?

Posted on: Wed, 04/30/2003 - 2:57am
McMelon's picture
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My Ds has been having constant outbursts lately. It is like he has regressed in that he seem unable to cope with life period. His allergies are horrible. he is on so many meds. We will be through his shots by this time next year and hopefully he will feel better. In trying to figure out what is going on with him I stumbled on some posts about mild autism and aspbergers. I was shocked at how much it sounded like My son. He is very intelligent but is recieving special help for fine motor and was for gross motor. I am scared to cause him to feel like any more of an outsider than he already does. Yet, I know I need to explore my instincts here. I want to be able to help him succeed in life. I know he is a very intelligent young man and i want it to be easier for him to learn. I need to understand if his brain has a different way of recieving or interpreting info. I am not sure where to begin. How do I find out more or where did you get your kids evaluated? any advice for this scared mom would be appreciated. Thank, you Melody

I just realised I should have put this under off topic but do not know how to move it.sorry

------------------
Mcmelon

Posted on: Wed, 04/30/2003 - 3:44am
MeCash's picture
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Melody:
I don't know very much about your son, but I can tell you that it is always better to follow your instincts as a mother.
My son, age 7, has Asperger's and CAPD (Central Auditory Processing Dysfunction). The process for getting a proper diagnosis literally took 2.5 years, 4 different psychiatrists, two different school evaluations, trips to the neurologist to rule out seizure and many, many trips to the pediatrician. My son was diagnosed with ADHD by three shrinks (which to this day, I refute), Oppositional Defiance Disorder, DSI (Sensory Integration Dysfunction) and went through many different medications before I blew up and fired the medical community for anything other than physical conditions.
The place to start, however, it with your community's early intervention program. Ours is called Child Find, but you should be able to get information on an early intervention program where you live by looking in the white pages, calling the school systems superintendent or asking your pediatrician. This service is for children 18mo to 5 years old and will evaluate for many things and provide county services for special needs.
The next thing I suggest is to ask your pediatrician for a referral to a psychologist (NOT psychiatrist, as they will be prone to say, "ADHD" and medicate without an evaluation) who specialized in autistic spectrum disorders (PDD-NOS, DSI, Aspergers, etc) and do a lot of internet research. When you visit this specialist, do NOT accept any diagnosis without a thorough evaluation, (testing through hours of observation, one on one).
Also, if your son has been seeing an Occupational Therapist for gross/fine motor skills delays, get any information from him/her that you can and ask them if they believe your son might be in the 'autistic spectrum' as they can also provide MANY recommendations to specialists in your area. OT, PT and SLP specialists generally work with a lot of autistic spectrum children and should be fairly knowledgable in being able to recommend someone.
Melody, I know it's frightening to think there is something wrong with your child and easy to have a huge fear of the unknown. I know my son is Aspergers, but I look at it as a gift. My son is a savant (literally) on the piano. He is gifted and extraordinarily smart. He has social issues, behavioral issues and attention issues, but none of those things are unlivable with. None of those things change the nature of my relationship with my son.
You are welcome to email me anytime to talk and share stories. When I first found out about the AS (for sure), I joined a board like this one called the SIDgroup at yahoo. I can't remember the link anymore, but if you do a search on "Sensory Integration Dysfunction" I am sure you will come across it. It was a wealth of information in autistic spectrum disorders and was a lot of help, although I don't use it anymore.
I fired the medical community. I fired the public schools. My sons 'disorder' in my mind is a gift. I can try to make him be like other people, or I can try to help him be the best he can be and BETTER than normal people. That's my goal. Yes, he has to learn to live and socialize with others, but I figure by the time he's an adult, he'll be okay. He's never, ever had a problem dealing with adults, only children. He doesn't see himself as a child.
I know that when you add another issue like this to something like the allergies, it can be very overwhelming (mine came in the opposite order!) It could be possible, too, that your son's issues are a direct result of his present medications????
Just a thought. Email me and we can talk more.
~Melanie

Posted on: Wed, 04/30/2003 - 3:51am
river's picture
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Joined: 07/15/1999 - 09:00

Your son's emotions could also be a side effect of the medications. I know that when I've given my son benedryl this normally easy going fellow gets aggressive and argumentative. Also, others on this board have also mentioned how their personalities change when taking this drug.
I don't know how old your son is, but there could also be other pressures in his life causing these outbursts.
Usually people with autism show tell-tale signs when they are infants. If these are recent changes in your son,(who I assume is not a infant), you'd probably be best to look at other causes.

Posted on: Wed, 04/30/2003 - 4:52am
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We went through similar worries at the beginning of last year when I finally admitted that at age three, my DD's social skills, development in certain areas, and speech were not what they should be. Like you, I had fears of aspergers because she seemed to fit so many of the descriptions. We had her evaluated through our county's EI program and my worst fears were NOT realized. She does have a pragmatic speech delay and qualifies for various services because of this and some gross motor delays. A year of minimal speech therapy and participation in a public preschool "outreach" program has done her wonders.
Certainly get your child evaluated, but at the same time remember that Aspergers syndrome is one of those slippery things and LOTS of people sound like they could have it and don't, simply because so many behaviors fall within the Asperger's spectrum. The medications your child is on could also greatly be affecting his behavior.
Good luck!
Sarah

Posted on: Wed, 04/30/2003 - 4:58am
MeCash's picture
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Joined: 04/18/2001 - 09:00

Quote:Originally posted by river:
[b]Usually people with autism show tell-tale signs when they are infants. [/b]
River:
Not to contradict you entirely, because I also raised the question at the end of my post about it possibly being medications, but these 'tell-tale signs' can be onset later.
My son was over 5 before being diagnosed as Asperger's. Asperger's has some symptoms like autism, which is why it's under the 'spectrum,' but Asperger's kids are generally very high functioning and very bright and many of their symptoms do not begin to manifest until you see the child dealing with others in his/her peer group, as Asperger's is very much a social disorder.
I don't know what behaviors Melody is seeing in her son and whether or not they existed prior to medications or not. My son's behavioral issues were definitely exacerbated by Ritalin, Benadryl, and asthma medications, but they did not go away when we ceased using any of those medications, only lessened in severity.
And there is also a belief that some children with autistic spectrum disorders are actually suffering from mercury poisoning from vaccinations and/or environmental sources (such as fish), as the symptoms for mercury poisoning is very similar to autism, and many autistic kids have tested positive for having a high mercury body burden and are undergoing things like chelation therapy to remove those toxic levels and hopefully pave the way for their brains to redevelop the damaged neurofibroids in destroyed by the mercury itself.
For kids in the autistic spectrum (AS, autism, PDD-NOS, DSI), there is also great benefits to be had from avoiding certain foods. Visit [url="http://www.gfcf.com"]www.gfcf.com[/url] and you will learn that many kids with these issues see almost complete recovery from their symptoms by eliminating casien and gluten from their diets, regardless of their 'allergy' testing results.
~Melanie

Posted on: Wed, 04/30/2003 - 5:31am
MommaBear's picture
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Joined: 09/23/2002 - 09:00

Interesting article:
[url="http://www.wired.com/wired/archive/9.12/aspergers_pr.html"]http://www.wired.com/wired/archive/9.12/aspergers_pr.html[/url]
Disclaimer: I do not guarantee the accuracy or content of the link in this post.

Posted on: Wed, 04/30/2003 - 10:56am
Codyman's picture
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Joined: 08/14/2002 - 09:00

Tell tale signs may not be noticeable at birth but maybe sometime around 2-3 years of age. Although, one may not be able to 'see' these tell tale signs at this age.
This was the case with my nephew who at 2 years of age had tell tale signs of regression of a 'normal' developing 2 year old. Which my sister refused to acknowledge that something was 'different' with her son. My nephew wasn't diagnosed until 8 years old!!!
The age of diagnosis varies from the time the parent begins any form of intervention with a Doctor or when the school begins their own documentation concerning a child and requests various assessments for the child.

Posted on: Thu, 05/01/2003 - 3:47am
river's picture
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Joined: 07/15/1999 - 09:00

Hi MeCash:
(I actually posted around the same time as you, so I did not see your response before writing.)
Thanks for correcting me. You are right about the later recognition of some forms of autism. I guess this is particularly true of Aspergers where the child tends to be very talkative so it may not be immediately apparent until the ages of increased social interaction.
I found this list of the types of autism in case it should help anyone:
AUTISTIC DISORDER:
Impairments in social interaction, communication, and imaginative play prior to age 3. Stereotyped behaviors, interests, and activities.
ASPERGER'S DISORDER:
Characterized by impairments in social interactions and the presence of restricted interests and activities, with no clinically significant general delay in language, and testing in the range of average to above average intelligence.
PERVASIVE DEVELOPMENT DISORDER (Not otherwise specified)
Commonly known as atypical autism, when a child does not meet the criteria for a specific diagnosis, but there are severe and pervasive impairment in specified behaviors.
RETT'S DISORDER:
A progressive disorder, which to date has occured only in girls. Period of normal development and then loss of previously acquired skills, loss of purposeful use of the hands replaced with repetitive hand movements beginning at the age of 1-4 years.
CHILDHOOD DISINTEGRATIVE DISORDER:
Characterized by normal development for at least 2 years, significant loss of previously acquired skills.

Posted on: Thu, 05/01/2003 - 3:53am
McMelon's picture
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Joined: 09/21/2002 - 09:00

Thank you all so so much for responding. I am hoping it is due to the recent increase in allergy medications. He is on Advair, Zyrtec, Areokids, singular, Nasonex, and Patanol. He is not doing well at all with this years spring pollen. He has shown some 'symptoms' since as long as I can remember. There were so many little things. Mainly would be his outbursts and his difficulty with change. His outbursts and crying had subsided until recently. He continues to have difficulty with a change in routine. He cried yesterday (and has every year) when we put away winter clothes and get out summer stuff. He cries when we rearrange furniture. He spent an hour in his room crying the last time I got the interior decorating bug. He is six 1/2. He is upset every friday about school because the day is less structured. They clean their desks part of the day instead of their normal activities. He doesn't have blaring social skill problems. He is shy. He doesn't act out in class. He does take turns and share. He is not assertive. I am thankful he is such a sweet kid, but feel bad when he doesn't stand up for himself. I thought he had advanced motor skills. he had his pincer grasp very early. he played with kiddie siscors and playdough before 2yrs. Then we get to kindergarten last year and he was tested as having poor fine and gross motor skills. he is recieving help for the fine motor. He has such difficulty with his homework everynight. He has always had difficulty with heights. He is still scared of those indoor climbing playgrounds. Another thing I noticed is that he will ask you a question three times, everytime regardless if you are answering or not. He has a great attention span for thing he is interested in. he can sit and work on his coin collection for hours. He was born 4 weeks premature. I started to think the minor delays they were seeing at school were a result of that.
I will start with his adaptive ed. teacher and see if she what she thinks. Thank you so much again for listening. Any further input would be greatly appreciated. Melody

Posted on: Thu, 05/01/2003 - 6:56am
MeCash's picture
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Joined: 04/18/2001 - 09:00

Melody:
Oy. Ok, that does sound familiar on a lot of notes, but the best thing to do at this point is request an evaluation with his school (tell the school psychiatrist you 'suspect' there could be a problem) and see if they are willing to do one. They might not be, if he is doing well in school.
There are also a lot of really good books out there, which can give you tips and techniques for use at home to help him with the emotional outbursts. I find that bear hugs and spinning him are most effective for my DS. What would otherwise be a 20 minute crying fit immediately gets 're-regulated' by being spun for a minute or hugged deeply. People also use brushing (of the skin) techniques, shown by an OT (didn't work for us), and weighted vests and chewy tubes for those sensory seekers. My son would chew his shirt collars to soaking holey messes before the chewy tubes. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
Good luck and let us know how everything turns out.
~Melanie
mom of AS/PA/CAPD DS age 7 and PA DD age 2
step-mom of DS age 9

Posted on: Thu, 05/01/2003 - 8:52am
MommaBear's picture
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Joined: 09/23/2002 - 09:00

MeCash,
I tried to access the link you provided, but it took me to a "domain 4 sale" page. Is there a new link?
ps........., I am very good at sewing new edging on favorite baby blankets. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] New, silky, shiny, edging. With rounded corners.

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