Discussion in 'General Parenting' started by PassedExhausted, Jan 7, 2014.

  1. PassedExhausted

    PassedExhausted New Member

    Hello all!

    I haven't posted in a while and so I needed to recreate my account. I have a question for some of the more experienced parents that have gone through the Autism Spectrum Disorders (ASD) battles. In January of 2011, my son (14 at the time) was finally diagnosed with Autism Spectrum Disorders (ASD) (Aspergers actually). I thought, "Finally!" It was like validation to what I'd thought his whole life. It was by a respected psychologist at the long-term children's in patient unit (for the 2nd time). At that point, half of his team/school thought this was accurate...the other half really didn't. At that time, I had strong supporters on his team that absolutely felt this was an accurate diagnosis. Since then, my son has been to an Residential Treatment Facility (RTF) and now back to school. The Residential Treatment Facility (RTF) staff definitely felt that this diagnosis was "mistaken based on crises behaviors presented at the time." And his school...also doesn't see him as Autism Spectrum Disorders (ASD). The difference is, I currently have no other supporters who actually are in agreement the diagnosis (which is stated in an evaluation/assessment report). So, whereas, in the past I've felt validated and supported, I now feel like I'm out here by myself with people who can't see passed how far my son has come. My question is: Is this standard on the part of health professionals? I mean I thought I would get a diagnosis and everything would fall into place...instead there's more confusion and sometimes downright animosity. No one seems to agree on anything.

    Thanks for any direction you can give me.

  2. TerryJ2

    TerryJ2 Well-Known Member

    Hi MK,
    welcome back, but so sorry you had to visit us. :( I feel for you.
    So, now that he's not in crisis, what do they think he has? Bipolar or something? Is he on medications?
    Are they trying to say that he has absolutely nothing wrong, so they can get out of Special Education classes or something? That's what some people in the system will do ... pass him on to someone else.
    Is he at home with you now?
    What are his behaviors like? Any Obsessive Compulsive Disorder (OCD)?
    I'm wondering if the Residential Treatment Facility (RTF) staff thought it was a mis-diagnosis simply because the routine there was so consistent.
  3. InsaneCdn

    InsaneCdn Well-Known Member

    Do your own research. Read biographies of Aspie people, not just the clinical stuff. See if YOU feel the diagnosis still fits. If YOU do, it's probably correct. If YOU do not feel it still fits, then there may be something else - or something additional - going on. At his current age, some Aspie traits may not be so obvious, while others really show up (like social skills).
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I am thinking that he may have more than one disorder, which is common. Can you explain how he behaves and what is confusing the professionals. Forget the teachers. They have no dog in this battle as they are educators, not diagnosticians.
    Has your son seen a neuropsychologist?
    All of us have our own experiences. IN our case, my son, who is now twenty, was diagnosed with Autism Spectrum Disorders (ASD) at age 11, although is father and I "knew" it even before we adopted him so we did our homework and pressured the schools for the proper Autism Spectrum Disorders (ASD) interventions (no easy task with a wrong diagnosis).
    That helped him. Perhaps your child just didn't get the right interventions???
    Anyhow, back to our story. Once my son did get diagnosed, nobody questioned it. That was like a lightbulb moment for everyone in his life and it made sense.
    What kind of professionals are you talking to? In my opinion there are only two experts you should listen to. Again, this is MY opinion. Those experts are, first and foremost, a neuropsychologist. If you haven't had him see one, I highly recommend that above all other types of diagnosticians. They test for 6-10 hours and tend to find things others miss.
    My second esteemed professional would be his psychiatrist (the guy with the MD), although they are not as "on" about Autism Spectrum Disorders (ASD) as a neuropsychologist. They still have a heck of a lot of training that therapists, counselors, teachers, your aunt :) and even regular psychologists who are not neuropsychs do not have. However, our son's psychiatrist misdiagnosed him as having bipolar instead of Autism Spectrum Disorders (ASD) and he was wrong.
    Does the RFT staff even have credentials? I had a foster kid in an Residential Treatment Facility (RTF) and was appalled at both the treatement of the kids (or maltreatment) and their ignorance of his problems. Again, JMO, but I'd never trust what an RFT worker thought. I'd even be leery of the psychiatrist. Unless your son's Residential Treatment Facility (RTF) was far better than this childs, and it very well could be, the staff seems to think (or ours did) that these kids are all just plain bad kids. They would carry them off to put them in "quiet rooms" and we'd hear their desperate screams. I just didn't trust them. However, there are good RTFs. Was your son's a good Residential Treatment Facility (RTF)?
    What does your Mom Gut say? What does your son think? Does your son have friends? Is he socially clueless? Why not share a bit more about him? How was he as an infant and toddler? Did you have a normal birth? Was he ever sick?
    You will be validated here :) WE care.
    Last edited: Jan 7, 2014
  5. PassedExhausted

    PassedExhausted New Member

    Thank you all for your responses! Let's see if I can accommodate the requests for additional information ;)

    He has had multiple diagnosis's over the years. His PCP and I have always thought he was on the spectrum...especially since he has a family hx. I won't say that his PCP couldn't have done more...but this was 11 years ago...and serious mental illness/Autism Spectrum Disorders (ASD) in children...were still on the "let's not rush into anything" side of the equation. If I had a penny for every time I heard, "We don't want to put a label on him this young," I'd be rich. It's not so much that I wanted a "label" or diagnosis....just to throw one out there...but it helps to have all necessary information (if that makes sense). So, we had early intervention assessments done...the first team of 5 people...5 PEOPLE...met with my son for a couple of visits equaling like 2 hours. They sent the findings up for a higher level of review because they felt very strongly they were looking at a case of Sensory Integration Disorder (SID). A woman came out to speak with my son a month later, took him into a side room at his preschool for 10 minutes and said, "He's fine...immature for his age, developmentally delayed...maybe ADHD."

    I raised holy did his preschool teacher who witnessed him fall backwards in his chair onto their hard floor, do nothing to stop himself, and not even bat an eye after his head bounced off the floor...let alone shed any tears. That was actually why she made the scared her lol. He had lots of sensory type stuff..leaning into people, no regard for personal space, attention issues, lack of response to pain/cold,lack of eye contact, social awkwardness, developmental delays etc. So, we started ST, Occupational Therapist (OT), and resource help for him. He had these therapies with great success for 6 years.

    Then the violence/aggression he was always showing at home started rearing its head at school. This led to diagnosis's of bi-polar, ADHD, even possible he started having visual/auditory hallucinations, anxiety, paranoia...extreme depression. Around this time...the daredevil he always was disappeared (around 8-9?) All of a sudden he wouldn't go down steps without my help. I had to carry him down steps that had spaces between them. He was hospitalized a few times. Again, shying away from any definitive diagnosis. Though ADHD stuck...and my very favorite...ODD emerged lol. He was finally placed in a longer term inpatient adolescent unit and right away the psychiatrist and psychologist there thought he was on the spectrum. The psychologist even went so far as to do a diagnostic assessment with me and her own findings from observing him over a nearly 3 month period (in two different visits) and she confidentally made the actual diagnosis of Autism Spectrum Disorders (ASD) based on the assessment and her findings. That was three years ago.

    My son has been in a school program with day tx services since he was 11...this is a blessing and a curse lol. When we were going through the hospitalizations and then the Residential Treatment Facility (RTF) placement, his day treatment counselor was so great. She had always believed he fell on the spectrum and she shared with me that although my intuition was correct that many people at the school program did not agree with the diagnosis..that there were many people that did agree with the diagnosis. Since then, it's been a mixed bag of opinions...including the Residential Treatment Facility (RTF).

    Currently, he still exhibits many, many social deficiencies and doesn't read cues. He still has a mostly flat affect...but not like when he was younger. He can make eye contact with prompting. He still needs a strict structured routine. He has no concept of how his behaviors affect others and he truly believes that when he is over something...everyone else should be too. And it's not the normal teenage attitude. He truly doesn't grasp why people aren't moving passed whatever the issue is. And it's all issues...from bumping into someone to throwing a phone against a wall. It's not an empathy thing...he can be empathetic...he just can't see how someone else feels...nor can he see outside his own needs/wants.

    He has no concept of abstract ideas...this makes learning consequences difficult. I can tell him, "You're going to be 16 soon and then you will be treated as an adult if you attack someone or destroy property," and he can know that...but the idea of how to avoid it is totally alien to him. When he is in the moment 95% of the time he can't access coping skills to make a good choice. It's like there has to be a planetary alignment and the Earth spinning in just a certain way on it's axis so that he will make a choice to seek out help when he feels himself losing it. This leaves his whole team scratching our heads as to what was different about this time as opposed to the last 20 times?? But, there's NEVER an answer. Interestingly, I really don't think he knows the words he needs to express himself. That is one thing we all agree on. We are positive he parrots what he's heard us (his team) use to describe his feelings/behaviors.

    He's still developmentally delayed...around the age of a 12 year old. He still has bowel movements in his pants..and doesn't care. I have to literally drag him to the bathroom to make him clean himself up. If someone comments on his smell..he gets upset/angry. But he still won't independently clean himself up...and it won't stop him from doing it again. I don't think this is just mental illness and just developmental delays. I feel strongly (as I always have) that it's the big picture. These things are linked. Aspergers typically presents with both ADD/ADHD and Generalized Anxiety Disorder (GAD). I don't think it's a million little things. I think its one big thing with a mental illness.

    Hope this helps. Thanks for the validation!!! :)

  6. TerryJ2

    TerryJ2 Well-Known Member

    Sounds very Aspie to me.
    In regard to the bowel movements and bathing, he's never going to do it because it bothers him. It's got to be a house rule. Just like no door slamming, using a fork to eat, that sort of thing. If he has sensory issues, try Wet Wipes, followed by dry TP.
    Sorry, I can't recall ... is he adopted? I'm wondering about the no-pain issues.