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Old 12-26-2011, 07:31 AM   #1
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Worried about a misdiagnosis of AS

I have a 2 yr old granddaughter whose parents are having her tested for autism or AS and am worried that she will be misdiagnosed all because of the lack of instructional parenting skills of her parents. Please do not get me wrong because I am not downplaying at all or insinuating that all parents that have children with these disorders are the same. I know these disorders are very real. My GD is very smart, very coordinated and very determined to find out why something ticks. She will not give up on trying to figure something out; however, she does not speak very well. What I am wondering is whether or not a specialist will look at the child's background and how she was helped to develop at home before a diagnosis is made. She is not allowed to interact with other children her age, she is sat in front of a TV constantly playing cartoon movies since they do not have cable. Her mother still babytalks to her and they are constantly eating nothing but junk food, pizza and burgers from fast food restaurants. If her mother thinks that she can get any additional financial assistance from the government, she will use our GD to achieve that goal. For anyone who has dealt with specialists of this nature or tests that are performed, please assure me that the specialist will look at the overall big picture before making his decision on any diagnosis. Thank you.

 
Old 12-28-2011, 04:08 PM   #2
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Re: Worried about a misdiagnosis of AS

Oh God, please advocate for your Granddaughter then! if you don't think she has any real Autism spectrum traits and you think that what the specialists will observe during evaluation is the result of how she's been ''raised'' and misdiagnosis it as an ASD because of your daughters ''push'' then I seriously advise you to step in, an ASD diagnosis can be like poison to a normal child and will follow her around for the rest of her life. Maybe she has an expressive language disorder, it could be many things - why are they jumping to the Autism theory so quickly, that should be the last guess after she's missed several milestones and continues to seem severely socially withdrawn. Please ask to give your input when she goes through the assessment, it's the best thing you can do to make sure things turn out accurate.

Last edited by Beelucious; 12-28-2011 at 08:24 PM.

 
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Old 12-29-2011, 06:41 AM   #3
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Re: Worried about a misdiagnosis of AS

Thank you for your response. Unfortunately, I am not allowed to be around my granddaughter. I am homebound due to development of chemical sensitivity where if I am exposed to any of the chemicals contained in fragrances, i.e., air fresheners, candles, perfumes, laundry detergent, etc. and etc., I will have a toxic reaction. I am told that I am welcome to come over there to see her knowing full well that my health prohibits me from doing so and my son will not bring her out to my house per his girlfriend's wishes. My husband does advocate for the both of us but with many limitations. He knows that if he rubs our son's girlfriend the wrong way he will not be allowed to see our GD. Our GD is constantly used as a pawn to get what they can out of my husband. Our GD loves anyone she sees and is very socially inclined. My husband says that our GD is always talking up a blue storm and, if you listen closely, you can pick out words in her conversation. I have not seen her for approx. 8 months which was the last time our son was allowed to bring her out here. She loved coming out to our farm and squeeled everytime she saw me. I would work with her in all types of her development and saw what she could do and she was very adept at figuring things out. Again, her mother will do whatever is necessary to obtain more monetary assistance, or drugs, from the government (that is why she is pushing for this diagnosis)and she knows that we are caught between a rock and a hard place. Even if I could find out what DR she is taken to, they will probably not talk to me without her mother's permission. I have read about the drugs that they may put her on and it scares me to death but what else can I do? Our GD has had a multitude of drugs put in her body because her mother always insists that the Dr's give her more drugs any time our GD has every little and minor ache or pain because she herself was (supposedly) a drug addict meaning that is that she no longer is? I feel at a loss not knowing what else I can do.

Last edited by hawk1; 12-29-2011 at 06:45 AM.

 
Old 12-31-2011, 02:17 PM   #4
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Re: Worried about a misdiagnosis of AS

A good Dr. or specialst will ask for the childs history and development. A evaluation for autism or Asperger's syndrome should be in depth and take at least a hour or so to complete. If the mother does not know much about austim or ASD traits she will not know what to say , the specialist will see right through this. the specialist will observe your grand daughter and write down any familiar autistic traits the child might have that would point to a diagnoses . A blood test might be ordered due to fraglie X syndrome. It is not going to be that easy for the mother to "fake" the symtoms of autism or ASD. Not a really good Dr. or specialist will put up with that, and will know pretty fast what the mother is trying to do. It is not up to the mother to decide if the child has it or not. With what you said about your granddaughter does not sound like autism to me . And yes, the enviroment in which she is living can have a impact on development , but autism is a severe disability and their will be certain autistic like traits that the Dr will be looking for in the child, if the mother is not educated enough on ASD's to try and 'fool" the Dr. then their is nothing really to worry about. hopefully the child will be going to a experienced Dr. and the Dr. will see right through what the mother is trying to do. It is not so easy to fool a DR. especially one who specializes in ASD's.

 
Old 01-01-2012, 07:20 AM   #5
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Re: Worried about a misdiagnosis of AS

Thank you for your response mscat40. I spoke with a friend of mine who has taken psychology classes, studied extensively and wrote papers on autism and has spoken with her professors about why Dr's are so quick to put a label on a child and they told her that the Dr's and specialists also benefit financially by "labeling" a child. Please don't get me wrong with my use of the term "labeling". I don't consider it "labeling" when a child is correctly diagnosed after complete and accurate testing that is required. I do consider it "labeling" when a Dr uses a diagnosis when they are at a loss to know what exactly is going on and uses "labeling" as a last resort. Dr's are very quick to medicate, medicate, medicate when they don't know what they are dealing with as I have seen it happen to myself and many, many other people and the drugs they put them on do more damage than good but they also benefit from that since they have very close ties with pharmaceutical companies. I also found out that if my GD's mother can get her "labeled", our GD will be placed on SSDI and will receive a check every month in her mother's name. They would see through the hype only if they placed my GD in a very structured, organized and teaching environment away from her parents for just 1 week and they would see a remarkable improvement. This woman has already had her parental rights terminated with 2 other children by another state but I doubt that they are even aware of that. I miss my GD sooo much and we always had very productive play times together and there was no mention or thoughts of any developmental problems when she was allowed to come out here once a week and only started when my son stopped bringing her out here and she started developing behavioral problems. She loves to see her Grandfather when he goes over there and just drops her little head when she sees him leaving. As soon as her mother can get her labeled and start receiving federal checks, we have no doubt that she will take the child away from her father and move out of state. It scares me to death knowing what this child is going to have to deal with for the rest of her life.

Last edited by hawk1; 01-01-2012 at 07:22 AM.

 
Old 01-01-2012, 01:57 PM   #6
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Re: Worried about a misdiagnosis of AS

I have seen this happen before. A perent wanting the child diagnosed ao the parent can try and gett SSI benefits on behalf of the child, the parent will be the childs representative payee. These are all the wrong reasons for a diagnoses. The parent will still have to meet the income requirements which is very tight, the parent will not be able to live on this income alone. It is around $700 dollars a month. Unless she wants to live in poverty and raise her kids on such a little amount, it is not enough to sustain a family each month. The mother will still need to file for benefits for the child, and go through the process , this can be a difficult task, it will not just be handed to the mother. The mother might not be found capable to handle the SSI beneifts , therefore it would be assigned to someone else. If the shild was approved for SSI , as a family member who knows the situation I would go down to the social security office and voice my concerns, make it difficult for the mother or impossible for her to be the represenative payee. Especially if you know the parent is not going to use the SSI income on the child . It is sad a parent would do this in order to recieve a little extra income so she can abuse the system , or use the SSI for her financial gain. This is not how social security is suppose to work.

Last edited by mscat40; 01-01-2012 at 01:58 PM.

 
Old 01-02-2012, 06:49 AM   #7
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Re: Worried about a misdiagnosis of AS

Thank you MSCat40. Unfortunately, her mother has been dependent and abused the system her whole life and she does know very well how to manipulate the system. Our son was not raised that way as we have never filed for welfare, food stamps, etc. Sure we had to tough it out at times; however, the thought never crossed our minds to apply for any assistance, we lived out in the boonies when we first married and did not have any money for food, gas, electricity, etc. but we lived off of the land. We fished and hunted for our food and cooked it over an open fire and I was pregnant at the time but we managed and ate very well until we had the money for the rest. It did not even cross our minds to call our parents for money because we insisted on being self-sufficient. I may have to go against my husband's wishes and make some telephone calls. He is the only one that has any contact with our GD and he is afraid that when she finds out, and she will, he will not be allowed to see our GD any more. You don't know how much I worry about our GD's future and how she is being raised without any morales or self-pride. I hope and pray that you are correct in that it will not be that easy for her to get our GD's SSDI benefits but she is very good at what she does.

 
Old 01-02-2012, 07:10 AM   #8
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Re: Worried about a misdiagnosis of AS

2 is way too young to get an Asperger's dx. Not too young to get a spectrum dx but Asperger's isn't usually dx until around the age of 7. It is much more prevelant in boys than girls. My son has Asperger's and goes to a private school for kids with Asperger's. All of the Aspies I have come across would never qualify for SSI. My understanding (I receive SSDI but am not that familar with SSI for kids) is that it is for children with profound disabilities or medical conditions. Based on what you describe of your GD it doesn't sound like she isn't and Aspie let anlone on the spectrum.

 
Old 01-02-2012, 07:12 AM   #9
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Re: Worried about a misdiagnosis of AS

Forgot to add that there is no medicine for Asperger's so you don't need to worry about her being overmedicated. A lot of Aspie's have depression along with it but I can not fathom that any dr even a crappy one would medicate a 2yo.

 
Old 01-02-2012, 08:28 AM   #10
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Re: Worried about a misdiagnosis of AS

Thank you Dismama. My GD's pediatrician referred her to a specialist to be tested for Asperger's or so my husband was told. I am wondering if he is doing so just to shut the mother up because she is, again, very adamant about pushing for more and more drugs for our GD for every little thing. The hospital is getting very put out because she runs our GD to the ER every time she runs a little fever which is natural for her age when her baby teeth are coming in. Our GD is already on Medicaid so I am wondering if that will make it easier for her to receive SSI benefits. On the research I conducted on Asperger's, they listed 3 or 4 different types of medications they may put the child on. Our GD has alot of energy because she is sat in front of the TV 90%of the time to keep her out of their hair and does not get many opportunities to go outside and play. Way back when she was brought out here, she would have a blast playing and running out in our field, interacting with our horses and dogs and when she was done, she was willing and ready to slow down and take a nap. She has absolutely no scheduled time to eat, play, nap or sleep with her mother and when they put her down at night they leave the TV on in her room so that if she wakes up in the middle of the night she will not bother them. Your son is very lucky to have your love and support and, unlike your son, our GD's disabilities are only that she is a product of her environment. They have not even attempted to try and potty train her so my husband is going to go and buy her some training pants and a potty chair and tell them that it is way over time to get her out of her diapers. Thank you again, dismama, and my thoughts are with you and your family.

 
Old 01-02-2012, 09:04 AM   #11
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Re: Worried about a misdiagnosis of AS

There isn't a med that can manage the symptoms of ASD. The meds are usually for the things that go along with it like depression, anxiety, and sometimes ADHD. (alot of times a kid who has asperger's starts with an adhd misdx) My son is on zoloft for anxiety and depression. I'm guessing your GD is on medicaid because of income levels. That won't effect the decision for SSI. My son's therapist describes ASD as a combination of traits. We always just thought our son was quirky. He still is but now we have a name for it and strategies to manage it. I understand you not wanting your GD labeled but for people like us it is actually a blessing to have a label. I hope things are able to get straightened out. Sounds like she really just needs some socialization. Kids with autism lack social skills no matter how much you try and instill them in them. As for the potty training from what I hear girls are much easier than boys. Peer pressure is finally what worked for my son. He was in preschool and eventually realized that all of the other kids were potty trained.

Last edited by dismama; 01-02-2012 at 09:06 AM.

 
Old 01-02-2012, 10:56 AM   #12
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Re: Worried about a misdiagnosis of AS

Dismama, Our GD does not lack any social skills just that she does not get a chance to socialize. She never meets a stranger. In situations such as your son's, I do not consider the Asperger a "label" but rather an accurate diagnosis. I only consider it a "label" if the Dr's do not know what they are dealing with and rather than admit that they don't, they will put a "label" on it. You sound like you know exactly what you are dealing with, as well as his doctors. My son and his girlfriend have not even attempted to potty train our GD because it is easier on them just to put on another diaper. I don't believe that we will ever have the chance to spend some quality time with our GD until she is old enough to have a say on where she spends her time. I miss hearing her squeel whenever she saw me and then throw out her arms for me. I will keep praying that God will watch over her and keep her safe from harm. Again, I wish you and your son all the best!

 
Old 01-02-2012, 01:20 PM   #13
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Re: Worried about a misdiagnosis of AS

I missed that somewhere that your GD is only 2 years old. This is way too young for a Asperger's diagnoses. their are a lot of professionals that do not even like to diagnose Autism at thie age unless it is obvious like Classic Autism. Asperger's Syndrome generally is not diagnosed until grade school, and sometimes a child with a Autism diagnoses will be found to have Asperger's later on as the child grows up and a lot of autistic traits disappear. IN order to have SSI the child will need to have medical records supporting this claim , usually from various Dr's , and it will have to be very severe ,and long lasting, something that cannot be "faked" by a parent. Asperger's Sydrome is the highest functioning on the ASD's , I doubt a child will get SSI with this diagnoses alone. It has to do with level of impairment and a lot of evidence to support the claim , this is not always easy to prove. It will not be up to the mother to decide but a team of Dr's who work for social security. Their are very specifc behavioral characteristics a dr. looks for and if the child does not meet the criteria of a ASD the child is not going to be diagnosed as have one. About the potty training, that is pure laziness on part of the parents , placing a diaper on a toddler instead of working with her to potty train. In the long run it is easier to potty train a toddler who is ready to learn, diapers are expensive . I honestly do not think you have much to worry about a Asperger's diagnoses at 2 years old.

 
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