How easily is it for professionals to misdaignose children with aspergers and autism?

Michelle - posted on 10/10/2011 ( 11 moms have responded )

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My 5 year old daughter was diagnosed last may with aspergers syndrome, since then though, they professionals believe it may have been a misdiagnoses and now claim she could be socially immature with delayed speech development. My 3 year old son was diagnosed at the same time with autism. He too is currently undergoing reassessment at his special needs nursery as his speech is rapidly improving and so is his behaviour. His understanding has always been sound. What my question is, is if professionals can misdiagnose if not all the information is available to them. At the time of their diagnosis I was not allowed to inform the staff that I was a victim of domestic abuse and they were witnessing this on a daily basis. Now the abuser (their father) has gone, home life is stable and secure for them and they have both almost defied their initial diagnosis. Both are comfortably reaching their individual pecs and are above the levels originally set for them. Any help or advice from anyone will be greatly appreciated. Starting to feel extremely guilty for not being brave enough to speak up about the truth last year and im worried that I may have intereferred in their diagnosis by this.

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Katherine - posted on 10/10/2011

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Have you told the doctors now? It could have been very traumatic for them, even made them suffer from PTSD. I would see how a misdiagnosis could occur. I would get another assessment. From a different doctor, just to be sure. The speech delay doesn't automatically mean autism. You can easily get a speech therapist.

Now that diagnosed your second son with it......you need to be honest in what's going on, or what WAS going on.

Nicole - posted on 10/19/2011

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Just to add...labels aside, try not to focus on a diagnosis label. Most developmental/emotional issues are still approached for solving the same way no matter what the root cause it. If they have been through a lot emotionally, they are going to act out and have issues dealing with their emotional anyway...having a diagnosis with a name may come with it's own long term issues, but for the time being the issues are what they are and as long as they are getting the help they need you'll most likely see improvements as time goes on. I think it's mostly complicated when you try to stick a label on it. If you focus your attention on the individual problems you are seeing, it can be dealt with more directly until some time passes and the smoke clears. Which can take a lonnnng time. (Coming from a mom who also left an abusive relationship with, and dealing with my daughter seeing her father coming home with all sorts of behavioral turmoil. THAT part just doesn't get much easier....)

Jennifer - posted on 10/10/2011

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Asperger's is very tricky and has as many faces as people who have it. Katherine is right on, you should consider having your kids re-evaluated (by another evaluator) and have the complete family history included so PSTD behaviors can be more easily identified. My son is 18 and I have a 2 foot stack of evaluations done over the years - one says inattentive ADHD (ages 4 and 6), one says PDD-NOS (age 9 while he was being bullied in school), one says Asperger's (age 9, different, objective evaluator without tie to the school district) and the final diagnosis was NLD (non-verbal learning disorder - same doctor who said asperger's but who has been treating him for years as he's grown out of some of the asperger behaviors) - the diagnosis changed as he got older and out it became easier to pinpoint exactly what was going on with him. So misdiagnoses can and do happen - even if you spill your guts about every possible household or family issue that might be affecting the kids. I think misdiagnosis is especially possible at the early ages when it's so hard to tease out what's really going on. You don't owe anyone an explanation as to why you didn't talk about the abuse in the first evaluation, any competent mental health professional should understand why you weren't comfortable talking about that while you were still being victimized. The evaluation that matters most is always going to be the most recent evaluation. Good luck!

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Michelle - posted on 10/23/2011

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I believe that my daughter who is now 5, no longer shows characteristics of meeting the aspergers criteria. She is now awaiting counselling though as her dad says negative things to her about me and she is struggling to digest this information and express it in correct ways. She has been noticed to self harm at home and school - pulling her own hair, ripping up her work, biting herself etc. My son does show some traits for autism still, he requires a nice quiet, safe area when he is frustrated. Since we left the domestic violence home, he has gone from strength to strength. Everyday he is developing his speech brilliantly and his behaviour is improving also. He does still require routines to help him and some visual timetables to help him prepare. I believe in my gut that they both suffered from PTSD but due to their diagnosis' of autism and aspergers, it was over looked. I dont blame the professionals involved for this. They are now reassessing both children as their needs have changed significantly. Some suggest ADHD, some suggest PTSD, some ASD its a brain boggler at the moment. All I know is that they have both defied their original reports which suggested no or limited social interaction and for my son no verbal communication. I feel that 2 and 3 years old is maybe a little too young to 'label' children. I think I need to look into PTSD a lot more. x

Christina - posted on 10/22/2011

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My daughter is so high functioning that if she were tested now for autism, she might not meet the requirement. However, seven years ago, she was so severe that at 25mnths old, she was at the developmental stage of an 11mnth old with no social interaction skills at all, regardless that she had two siblings at home.
Even though she is very high functioning, a straight A student, and in a regular class with no services any more, I know that her diagnosis is sound. She is just learning to make friends. She is 9yrs old. She couldn't even drink out of a regular cup until three months before she turned 5yrs old.
Do you question the diagnosis? Are your children suddenly losing all traits and characteristics of autism? It is very possible that your children were suffering from PTSD. Watching their mom go through domestic abuse is very traumatizing and can cause developmental delays and behavioral issues.

Michelle - posted on 10/20/2011

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It really does. A lot of people were insistant me and him met, I was very hesitant made him wait 9 months. In that time he was awarded full custody of his middle child. He didnt bat an eyelid to this and asked me for bits of advice and then got on with it. That was the first sign to me, he had patience with children. A huge must in my life. Since we met, we did everything correct. We would meet on a saturday with the children in soft play areas so it was nice, relaxed and informal. We have all gone from strength to strength. My partner has and is learning us women arent all cheaters like his ex wife. Im learning men arent all control freaks, the children are all learning that home doesnt mean violence. (partners daughter was subjected to violence from her mother). We are all happier now, still learning but enjoying doing it all together as a united front. The more settled us adults are, the happier children are.

Nicole - posted on 10/20/2011

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Seriously!!!! What would we do without a little welcomed understanding from people going through similar challenges. It's mind blowing, how you can spend so much time with someone who drags you down.....and then meet a person who actually enhances your life and you learn what a relationship can really mean :) Life takes on a whole new meaning :)

Michelle - posted on 10/20/2011

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Thank you. This all started as a bit of doom and gloom, but since Ive made positive changes (new partner who is brilliant with the children, a new home and new positive outlook) everyone and everything is coming together brilliantly. Its also people like yourselves who offer great advice that helps people like myself in these situations, and I am more then grateful to you all.
michelle x

Nicole - posted on 10/20/2011

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I am so happy for you :) It's nice to hear when things develop in a positive direction. Sometimes the most powerful aspect of healing and change is time. Nice job mama

Michelle - posted on 10/20/2011

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I have noticed a huge change in my children. They have had a rough year with big changes but it all seems to be for the better. My partner and his daughter moved in with us in july this year. Its still going very well. All 3 children have a huge sense of security and stability. They have all improved more then anyone thought possible. Ive learnt how to come away from their labels and look at them individually. This does make it a lot easier. Ive learnt that children can suffer from anxiety just like adults. Both my children are currently displaying this the days after they have contact with their dad. I dont feel that he is doing a bad job with them, I feel it is more a case of them just not having the same routines at his as they have at home. Ive tried to guide their dad but he sees me as being patronising so he is opting to do the trial and errors himself. When I look back to how me and the children were last year, wow! The changes are brilliant. Ive been very fortunate and have received brilliant advice and help from parents with autistic children and help from specialists in D.V. Me, Mya and Finn are on a high in a way. Last week in my latest court hearing with their dad, for the first time in 6 years, I gained control of everything and was listened to for the first time as well. Finally the courts and the childrens dad are recognising that the children arent text book and are now being seeing as individuals. This has been the biggest break through for us all and we are now enjoying the respect that is finally been shown. Both children are being reassessed in the new year so it is all positive from here on x

Michelle - posted on 10/11/2011

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Thank you both for your advice. The doctors and assessors are fully aware of all the background information now. They have mentioned it in their recent reports but as they are both still so young, they are struggling to determine what their needs are. Life is very complicated for them both at the moment as they are having regular contact with their father once a fortnight. He seems to have a trigger with them as both of their behaviours are dramatically affected in negative ways. Its taken me a year to be able to prove that I am not playing games using their dad. My daughter is now on a waiting list for counselling. Its just one thing after another at the moment for us all. Ive never felt so confused before. My daughter is being said to be socially immature and have speech development problems, she has a speech therapist once a week at school. She is in full time mainstream education and has a one to one care worker till 12 everyday. My son is in a special needs nursery at present. They to are re-assessing him as he has changed so dramaitcally. I guess im just feeling a bit frustrated, I would love to have accurate answers but that will come in time. I find it hard trying to digest all of this without feeling like a complete fraud and let down for not telling the whole background truth. It was made hard as their dad insisted on being there for every meeting and would threaten to kidnapp the children if I told anyone. Looking back I was stupid to have listened to him, but now Im left worrying that my actions may have caused my children to under go unneccessary stress. I only have to wait until January before their statements require a re-assessment by independent specialists. Again, thank you so much katherine and jennifer, I really appreciate your feedback.
Michelle x

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