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CS
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18 Apr 2013, 3:57 pm

I have an adopted child (6 yrs old) who seems to have symptoms similar to those that I am finding online under Aspergers.
She was on Clonodine, then Resperidone was added, then Clonodine removed, then we took her off of the Resperidone as it seemed to add to huge mood swings and tantrums.
Currently she is on no medication. She has behavioral issues, talks continually, rocks in whatever chair she is sitting in...especially in the car.
She has compulsive things that she does, like always wants bags. She puts toys, dolls, papers, almost anything in bags and carries them around.
She doesn't seem to get the concept of other peoples things are not hers to take and steals from other kids and adults. When asked why, she either says "I don't know" or "because I wanted it".
I am cautious about getting her diagnosed. I don't know how much a diagnosis might hold her back in the future (medical records kept forever).
I want to figure out how to help her (and regain and maintain our families sanity).
I don't like the idea of just putting her on meds that make her like a zombie (which Clonodine did), and I don't know how to find a professional that can help that won't do a 10 minute exam and just pigeon hole her and put her on meds.
Of course, if some type of medicine, special diet, exercise, therapy, etc. would help...I want to do it.

Any ideas of resources either online or in Minnesota to help us figure out best plan of action?



redrobin62
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18 Apr 2013, 4:15 pm

cathylynn
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18 Apr 2013, 4:19 pm

in our area we can call 211 and ask for support groups or whatever services might be available. wouldn't hurt to try it.

stealing is not part of autism.



jat
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18 Apr 2013, 5:26 pm

You mention that your daughter is adopted. Was she adopted at birth, or recently? If she was adopted as an "older child," do you know anything about her early childhood history? Children who have disrupted early childhood situations may be dealing with reactive attachment disorder (RAD) or post-traumatic stress disorder (PTSD). These can be very serious, and require treatment by a professional with proper training and experience in the area.

There are many, many conditions with similar symptoms, and it is not wise to try to diagnose your child on your own. It would be much better to speak to a skilled professional, and share all of your concerns, and answer all the questions asked of you, and let the professional figure out the diagnosis. It may be something you never heard of, or never thought of. You're the mom - you need to provide love and support; let the professionals provide the diagnoses. If they try to do that in 10 minutes, you have the wrong professional, because that should never happen. A proper diagnosis will probably take hours. Ask, before you make the appointment, how they approach these evaluations. Talk to more than one provider before you decide on who you will use, so you feel comfortable with your choice.

If medication is prescribed, it should not make your child into a "zombie." That is a sign of over-medication. If your doctor is satisfied with that kind of dosage, get a new doctor. If your child needs medication (some do, most don't), it should be approached slowly, cautiously, and the lowest therapeutic dose should always be the goal. Sometimes it takes a while to find a drug, or combination of drugs, that works. But if a doctor is satisfied with something that leaves a child (or any patient) in a state of lethargy, or otherwise "zoned out," that is simply unacceptable.



Greb
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18 Apr 2013, 6:00 pm

With regard to diet, look for low gluten diets and autism. It seems that help some people.

I agree with the previous one: stealing is not autism. Be aware that kids are kids and try to test adults to see how far they can get with it. If your kid has autism this can be a problem, since the person who is raising her doesn't know if she is behaving bad and testing the adult, or this is a symptom of autism.

For example: is she has asperger, rocking or stimming is not bad behaviour. It just helps her to relax and to deal with sensory issues.

Compulsion will be there her whole life. No way out of this. But they can be used to your advantage: make her try different activities. She can eventually find something interesting to get stick to. Being compulsive about carrying bags is useless. But being compulsive about drawing, or programming, or learning languages, or playing music, or this kind of things, can be a very interesting thing. (Don't force her. Let her find her special interest, just give her interesting things to try so she can obsesse with something that is gonna be useful for her in her life).


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animalcrackers
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18 Apr 2013, 6:19 pm

CS wrote:
Any ideas of resources either online or in Minnesota to help us figure out best plan of action?


Not sure what kind of resources you meant....hope these are helpful:

Minnesota Autism Center: http://www.mnautism.org/index.html

University of Minnesota Children's Hospital ASD Clinic: http://www.uofmchildrenshospital.org/Specialties/Autism/index.htm

Autism Society of Minnesota: http://www.ausm.org/


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briankelley
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18 Apr 2013, 6:21 pm

I think you need to treat this the same way as if you suspected a psychical ailment or disability. I don't think anything that needs to be diagnosed should be swept under the rug to try maintaining a clean medical record. Most adults who weren't diagnosed as children went through hell because of that lack of diagnosis.

It's a tough call in deciding the best way to protect your kid regarding this. But I have a feeling that having an Aspergers diagnosis buried in her medical record at age 7 isn't going to come back and get her as an adult. I actually had to do a bit of digging to find my records of when I was tested and diagnosed at age 7. I was told that a lot of my records had been automatically scrapped when I turned 25.

I don't think any of us ever liked any of the drugs we were put on. "Zombie" was the word used while I was on them. If she needs special care, special schooling like I did, then that's what she needs.
.



CS
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18 Apr 2013, 8:39 pm

She was not adopted at birth but at age of 3. There was definitely a disrupted/traumatic childhood.
I definitely want to get whatever help for her that she needs. I just have to deal with the bad taste that I have in my mouth from the experiences that we have already had with "professionals".
It's not that I want to try to diagnose/treat her without professional help. I just want to do my due diligence and research the next professionals that we take her to to make sure that their goal is to act in the best interest of the child. I know that they are all supposed to...but I KNOW that it is not always the motivation.

On the stealing issue, it seems to be related to collecting things that she wants and disregarding that they belong to someone else. It doesn't really seem to be a test of the adult, but more compulsive. We've had her for 3 years and have had her off meds for 4 months. I am pretty confident that I can tell when she is just testing us.

There are other issues other than behavior that I am sure contribute. She has some physical issues because of the situation she was born into. (eye misalignment and movement, palette/tongue issues, respiratory, etc.). We have multiple medical doctors and therapists for these issues, but they don't really get into the behavioral issues much.
As for a diagnosis of anything in her medical records, I don't even know what is already in her records. I hope to be able to get a full copy of her records.
Helping her adapt/adjust is foremost in my mind.

I appreciate all of the replies.



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18 Apr 2013, 9:29 pm

As young as a three-year-old is, a lot happens to a child in those first three years, and they are very formative years. I'd be very, very careful about ascribing her behavior to ASD. It could very well be a result of her traumatic early childhood. RAD often presents in ways that can look like autism, and just because they look similar, doesn't mean they can be treated the same, or that they would respond well to the same kinds of intervention; they wouldn't. Of course, RAD may not be the issue - it could be any number of other things. The OCD-type of behavior could be anxiety, resulting from the chaotic life, and lack of control that she experienced. There are so many issues, some of which may be helped by getting her full records, some of which you may never find out.

Having had bad experiences with previous providers, you are understandably "gun-shy" about approaching new ones. Try to research anyone you use. Are there any agencies that offer post-adoption services, that might be able to refer you to psychologists who specialize in working with families where children were adopted when the children were a bit older, and might have some issues stemming from those disruptions? Sometimes, agencies that provide adoption services also provide post-adoption services, even if they don't advertise them - try calling and asking. If they don't provide the services, they might refer for them. Try to get names of at least three providers, so you can consult with a few people, and decide who you think would be the best "fit" for your family.

Sometimes, children who have grown up in their early years, with trauma and deprivation, have a need to hoard and collect things (even if the things aren't theirs), because they are so afraid that they won't have anything if they don't take whatever they can NOW! It could be a survival issue, for her, rather than a true compulsive thing. The pain these kids have gone through is so heartbreaking, and they are often so fragile, even when they seem so tough, ... it's a difficult job, parenting a child like this - and SO worth it! Hang in there, CS. It will take a lot of time and patience, and you'll keep tripping over those "landmines" that you didn't know about, and you'll all get through it. You'll find the providers who'll care about your daughter almost as much as you do, and they'll fight for her, instead of with her, and you'll have some allies when you need someone to talk to the school, or whomever. It will happen, just take your time, and find them - carefully, and cautiously, but keep looking for them!