Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
Hi everyone. I am coming here to get some insight from parents living with special needs children to see if we can get some ideas of underlying issues that are not diagnosed or mis-diagnosed.
Background:
DD is 8, has been having issues since 2.5 years old. Nobody would evaluate her until 5, at which time she was dx'd ADHD. We began seeing a psychiatrist and therapist regularly. The meds helped with the impulse control and the inability to focus and stay still, though we were still having major problems at home and at school. We stopped seeing the therapist but kept up with meds for a few months and then began seeing a new therapist due to the frequency and durations of the meltdowns we were having. It was bad. Four hour meltdowns up to 4 x's a week. She would hurt herself, try to bite, kick, hit her father and I. Fast forward to 3 years later and we've now stopped seeing the psychiatrist (when he told me we wouldnt need therapu when we got the meds right). We stay on top of regular visits with her ped, where we continue her meds, and just started seeing a new counselor, in home.
Nobody has been able to put their finger on the underlying issues. She is angry, and frustrated a lot. She fails to do the most fundamental things properly (get shoes and socks, remembering to brush her teeth or potty in the morning). She requires constant reminders but at the same time she talks back because she feels like someone is always telling her something. Even when the frustration level in the house is low, she will find something to react to. We saw a neurologist who said she had sensory processing disorder. I told her I felt something was either mis-diagnosed or not diagnosed but I was ademate that we were missing a bigger piece of the puzzle. She told me she is too verbal and makes too good of eye contact to be dx'd with aspergers, but that she has some symptoms and it fits and that's what I was sensing was missing. We have been working with our new counselor for a few months on behavior modification and sensory issues. She did not find that there were red flags for sensory issues, but is leaning towards a personality disorder.
I feel like I'm at a loss. With therapy I have learned how to keep my emotions in control in response to her behavior but I find that we aren't seeing results in behavior modification. I began reading about high functioning autism and aspergers. I have seen video where HFA and Asp children keep good eye contact and are verbal and outgoing. But she is also very socially akward. She doesnt get the jokes people make, and finds that nobody gets her jokes and is very sensitive to that. She misses the signs when someone is annoyed or frustrated, angry, etc. She recently told the therpist that she couldnt recognize what it looks like when daddy and I are pleased with her behavior. She also could not describe or draw a picture that showed what respect or kindness looked like. She certainly lacks empathy but is manipulative... does this sound like aspergers? It's going on 5 years of constant battle in our house. No matter how hard we try as parents we are constantly feeling like failures. Our therapist was very open to the suggestion of aspergers today but I wanted to see if parents with aspie kids could relate or tell me "no this is not the typical aspie type kid".
Have you seen a pediatric neurologist or a developmental pediatrician? Has anyone done an ADOS test on her?
Autism and asperger's present differently in girls than they do in boys, so many therapists miss the dx in girls. Yes, she sounds like a typical aspie to me. My granddaughter who is 11 and was dxed at 8 is extremely socially awkward and does not get clues from people's faces or gestures about their emotions. Btw, asperger's children are often very verbal and in fact can be advanced for their age in vocabulary, but... they often don't speak appropriately. It sounds like your therapist does not understand asperger's. Usually there is a language impairment, but it can take the form of not understanding idioms which may be why she does not get *jokes.*
Yes, we saw a pediatric neurologist. She came up with the sensory processing dx. She stutters sometimes, other times having to stop and rethink what she's saying and try again. She'll sometimes go on and on about things I can't seem to follow. I have seen this happen with strangers and caregivers too, but it makes perfect sense to her. Occasionally she'll tell me something I consider straight forward and understandable but my response makes no sense to her.
Has she always had meltdowns? Our son was hyper and had impulse problems and we started medication. About 6mths into taking Intuniv he started raging at us. The psychiatrist insisted that the meds had nothing to do with it. We stopped the meds and he's back to his happy hyper impulsive self, no more tantrums.
If that isn't the case I would continue to seek out more specialists to help you. Do you have other children?
She has always had "the chip on her shoulder" which we chalked up to disrespect and always punished for it which escalated to meltdowns. Then we learned how to better manage that but she continued having them- they were the reason we sought out medication to begin with.
She is our only child. Her vocabulary is astonishing. She is articulate, too. It's just a weird way in which she speaks... Like she is grabbing thoughts from all corners of her mind and blurting them out but not in sequence as she's imagining them.
She enjoys having friends but friendships get strained quickly because she misses social queues, can be hard to understand and lacks understanding of others. It's sad because she recognizes the inability to keep friends but always assumes its them and not her. If we try to explain how something could have been perceived she gets defensive and says we're choosing their side. It goes that way in most reprimanding. She never sees her responsibility in things. And forget about being on time anywhere- even with lists and timers and directions she has aVERY hard time following instructions.
Thanks spaz. If you read my last post you'll see that we've already tried that route. It's readable and has pictures next to each task. Times too. And we have a timer that gets set so when it dings she knows she is supposed to be done with that task. I hate telling her what to do because all I ever get is back talk and attitude no matter how nicely or calmly I coax her to move on to her next task. It's like walking on eggshells all the time.
I don't think that anyone in this forum can give you sound mental health advice regarding this issue. I think that that you are doing right by following through with mental health services. I would recommend that you continue to work closely with the psychiatrist and the therapist in determining what is going on with your daughter. They are definitely in a better position to help you. I wouldn't even want to second guess as to what might be going on with your daughter without extensive interviews.
Mark I agree that nobody's opinion is a sound way to diagnose this but there are many parents that deal with all sorts of medical conditions and symptoms and it would be nice to hear from someone who has experienced this and what it meant for their child. It's not easy to see a child who is struggling and no answers as to why. She acts pretty typical so nothing stands out to the professionals we see and the issues I see are at school and home or in case by case experiences we have with her and its hard for them to see what we see. I have recorded her meltdowns and the last therapist we saw immediately recommended the neurologist. Who we went to and based on the info I provided figured it was a sensory issue because that can cause over stimulation causing meltdowns too. Many people who have aspie kids know that you can sometimes hear a few diagnosis before they get it right. I am simply looking for answers. Anywhere and everywhere.
I wonder how familiar this person is with autism and aspergers? Many individuals who have autism are quite verbal- especially those with aspergers! In fact, prior to the most recent update to the DSM, the only diagnostic difference in the DSM between autism and aspergers was that aspergers children did NOT show a significant language delay at a young age. Granted, psychologsts use the DSM while neurologists typically do not, and may have different things they look at.
Personally, I don't find that the important part is what the actual diagnostic label is, diagnostic labels change all the time, but getting one that will allow her to access services to address her needs. That is critical. She needs to have a thorough evaluation done which will determine her strengths and weaknesses. This will also allow a more accurate diagnosis. Then you can work on getting her more specialized therapies to address her needs. A developmental pediatrician would be a good place to start, they specialize in this type of diagnosis and will have a better ability to tease out what exactly is going on with your daughter.
~Katy
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
