Are there benefits to losing an Autism Spectrum Disorders (ASD) diagnosis?

Discussion in 'General Parenting' started by TheBoyHasArrived, Feb 20, 2013.

  1. TheBoyHasArrived

    TheBoyHasArrived New Member

    So, we've known since Kiddo was evaluated the first time that he will probably "lose" his Autism Spectrum Disorders (ASD) diagnosis when he is re-evaluated. I'm not sure how that works, but the psychiatric told us that he met the criteria at that time...but he was only 4 months post-institutional. I accepted the diagnosis, because it really doesn't matter to me what they called him if it gave him access to services.

    What I didn't expect is that all it's given him access to is a couple of hours of ABA per week (which does nothing for him right now). Our county does nothing in terms of services for children if they're served by the public school system and our school doesn't have anything geared toward kids with Autism Spectrum Disorders (ASD) anyways. But, every time I turn around, he's being "pigeon-holed." I'm so frustrated with being told, "well, autistic kids do _______" and "that's to be expected with a child with autism."

    He will go 3 weeks with pretty typical behavior, minimal stimming and behavior and then CRASH for 3 or 4 days--"Well, that's common in kids with Autism Spectrum Disorders (ASD)." Except that I work with kids with autism every day, and this is NOT normal. The last straw is that Kiddo has been crossing his eyes...everyone thinks it's a stimulant and totally "normal" for a kid with Autism Spectrum Disorders (ASD). And, it could be...but from watching him, it just doesn't look right. It doesn't always look voluntary, and his eyes aren't focusing typically even when he's not crossing them. But, it's because he is autistic and no one wants to even look at him. I had to fight for an appointment with the psychiatrist.

    I feel like the diagnosis is hurting him more than it's helping at this point, but he may lose his MR diagnosis at the next evaluation too. I think he really needs access to programs targeting learning disabilities--touch math, Wilson Reading, etc., and I think he has a much better chance at the school agreeing if they are told that his issues AREN'T caused by Autism Spectrum Disorders (ASD) or MR. Side Note: There's a school for kids with Learning Disability (LD) that will only accept him if his IQ is typical, but that isn't an issue until 5th grade.

    So...he doesn't HAVE to be re-evaluated for 2 more years. The psychologist recommended re-evaluation next month, because she doesn't think he will meet criteria for Autism Spectrum Disorders (ASD) or MR. I'm torn...the diagnosis aren't helping right now, and he'll lose them way before he'll have access to adult services (Kiddo is only 6 now) anyways--unless I find a doctor who knows nothing about PI kids, and then maybe he'll keep the diagnosis. And, of course I'm curious as to "where" he is now.

    What am I not considering? Should I just let it ride? I'm so tired of doctors, teachers, therapists...telling me that Kiddo is doing things because he's Autism Spectrum Disorders (ASD) rather than looking deeper into the issue.
  2. DaisyFace

    DaisyFace Love me...Love me not


    This makes me wonder what kind of insurance you have? If your son is on Medicaid and must receive everything through the county healthy system, it does not surprise me that you are getting the runaround. It's not so much the much as these people (in my humble opinion) just don't care enough to look into anything.
  3. Ktllc

    Ktllc New Member

    I would have him reevaluated if you think this doctor is a good one for your son. If you trust her judgement and suggestion. YOU want to know what is REALLY going on. And you cannot wait for the school to look into it, they simply do not have your motivation.
    To me, saying "it's typical for Autism Spectrum Disorders (ASD) kiddos" brings nothing! Typical or not, it needs to be addressed.
    Like you said, the name/label does not matter as long as he gets the right treatment. For the right treatment you need to identify the cause of the behaviors/challenges. To identify those causes, you need a thorough evaluation that takes his past and current environment into account as well as his internal functioning.
    Like you said, he is only 6 so try not to project yourself too far. He has time on his side. The more you learn about your son, the better you can help and advocate efficiently.
    I also hear you when you say you have enough of all the docs and appointments. I do to... but yet I try to see if V is bothered just like I am. So far, my answer is no so I keep going and digging. If you feel your son needs a break than certainly give him one. A few more months won't matter ultimately.
    We are fighting for the long haul and be able to rest is, I believe, very important.
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I always thought his main problem was Reactive Attachment Disorder (RAD) or attachment.

    Is it a problem if he loses his Autism Spectrum Disorders (ASD) diagnosis? If he actually has it, yes. If he doesn't, no. It is very hard for professionals to get the right diagnosis on kids like ours who were adopted and neglected and maybe exposed to drugs/alcohol in utero and maybe inherited stuff from the biological family. It is definitely a work in progress. And it can take a long time...and sometimes it is never completely resolved. Autism Spectrum Disorders (ASD) and attachment disorder often seem very much alike so it is very hard to know if your child has Autism Spectrum Disorders (ASD), I would imagine.

    You'll sadly have to do what I did and just go one day at a time until he gets older and it becomes very apparent what is driving most of his behavior. Sometimes it is many things. Do you know if he was exposed to substances in utero? Some of us have that info and some of us don't...if we don't have it, that's a big question mark. I have yet to meet a teacher that understands that our adopted kids with no history are different from the rest of the kids they teach. I'm sure they exist somewhere, but I never met any of them. Most never heard of fetal alcohol syndrome and never ever heard of attachment problems. Always remember, they are educators not doctors, although some seem to think they can diagnose based on their experience, but our kids are too complicated for even the best professionals at time, let alone educators.

    I wish you luck on the same journey that we had to take. We really didn't get anything that felt right or helped our son until he was eleven years old. Most of his diagnosis. before that were dead plain wrong. Use whatever helps him and, because of his complexities, I'd not worry much about the diagnosis UNLESS he is Reactive Attachment Disorder (RAD). Then in my opinion you need to address it aggressively!! Gentle hugs!
  5. buddy

    buddy New Member

    I feel like your gut is saying something else is going on. Has he been to a neurologist? Does he have seizures? Has he had a genetic blood work-up?

    If you have no diagnosis, can you get things like Occupational Therapist (OT) or speech/lang? Does he even need those? What if he does in a year?

    Just throwing out stuff you've probably already thought about a ton of times.

    What a frustrating spot. We got tons more services because Q had MA, we've never been denied services. Makes me nuts that any child would be. So sorry.
  6. InsaneCdn

    InsaneCdn Well-Known Member

    That was my take on the situation.
    Given that some form of attachment disorder exists for a minimum... he never was a "simple" case of Autism Spectrum Disorders (ASD) (not that there really is such a thing but... there are simpler and/or more complex cases)
    And he isn't getting help for all the other stuff that is going on.

    Really, you need an evaluator who understands attachment disorders AND developmental and behavioral stuff, to sort it out.
  7. TheBoyHasArrived

    TheBoyHasArrived New Member

    Insane, that's exactly my worry--that things are getting missed, because "he's doing really well for a kid with Autism Spectrum Disorders (ASD) (and MR, but that's just implied, not stated)." We have private insurance through work and Kiddo does not have medicaid, and we get no therapies at all covered. He qualifies for Occupational Therapist (OT) and Speech (significant delays in both), but it's out of pocket.

    MM- Who knows what is "main" issue is at this point. I second guess myself daily. Right now, he has an array of diagnoses that may or may not be the actual problem. We definitely have attachment issues, but I don't *think* it's Reactive Attachment Disorder (RAD). We've seen a neurologist, and she's great but I think she feels like she did the testing, and it came back okay, so we're done. He's had genetic testing, an EEG and an MRI. EEG was abnormal but no seizure activity (I'm not sure how a 60 minute EEG means that he doesn't have seizures the other 364 days and 23 hours a year)...waiting to schedule a sleep study.

    I don't think the labels are helping us at this point, but since he doesn't HAVE to be re-evaluation'd for a couple of years, I was just wondering if there was anything that I wasn't thinking about that losing the diagnoses would impact. There's only one "expert" that I know of and he is $$$, but we're thinking about going to see him. It would probably be worth it just to have the complete evaluation done by someone who has actually seen a kid like mine :) Just waiting to see if Kiddo #2 will be here by summer so we can schedule a baseline appointment at the same time.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I honestly wouldn't worry about it, since he is going to be difficult to diagnose. If you can, get as many services FOR FREE from school as you can and keep taking him to therapy and, of course, if he gets worse, go on fast forward. You are going to have the same trouble we did getting him rightly diagnosed. Just go with the stuff that seems to help him the most and read a lot of good books on attachment (some people have told me that reading good books about it and utilizing the techniques were very very helpful, especially without full blown Reactive Attachment Disorder (RAD)). If you feel he'd benefit from some Autism Spectrum Disorders (ASD) interventions, which help MOST kids with problem behaviors and/or delays, you can also help yourself by reading up.
    Your son's language issues...related to learning a new language?
  9. HaoZi

    HaoZi CD Hall of Fame

    While I'm no expert in Autism Spectrum Disorders (ASD), I've never heard of the eye-crossing thing and think you need to get him to the eye doctor to see if there's a physical cause going on there. I wouldn't rule out a medication-related cause, but seeing an eye doctor wouldn't be a bad idea.
  10. TheBoyHasArrived

    TheBoyHasArrived New Member

    I have a student who crosses eyes as a stimulant, and the behavior specialist said she has several kids that do it as a visual stimulant. I just had Kiddo to the eye doctor who checked out his eyes and the neuro didn't find anything atypical, but I'm dragging him to the psychiatrist just to make myself feel better.
  11. TerryJ2

    TerryJ2 Well-Known Member

    I completely understand.
    I am an information person and it is really hard not to have all the answers with my son.
    I've never heard of the eye crossing thing (so glad that you've found others, to compare) and it sounds like you're getting out and making appts, so that's good. I do not like to sit around and wait for others to just do their thing, or worse, NOT do anything and blow it off.

    We all want what's best for our kids. There is so much going on with them, it's hard to know where to start.
    Interesting that he coasts for 3 wks and then crashes. My son, as it turns out, has a mood disorder, which seems to be turning into bipolar, AND Autism Spectrum Disorders (ASD). Argh.
    You never know. But that's part of the hard part. Some of these dxes we actually won't truly know until our kids are in their 20s and maybe 30s.

    Many hugs.
  12. TheBoyHasArrived

    TheBoyHasArrived New Member

    Terry- If you don't mind me asking...when was your son's mood disorder diagnosed? Kiddo doesn't rapid cycle but he definitely does well and then crashes hard. It's not a set 3 weeks, but anywhere from 3-5 wks. We're trying to figure out if it's really cycling or if he has a bad day and then gets stuck in a negative feedback loop, if he had some sort of PTSD issue, if he's having a neuro issue, etc. During his "bad streak," everything goes...huge increase in stims, negative behavior, big decrease in communication, difficulty focusing, difficulty with previously known skills, etc. I only know a couple of people with kids with mood disorders (diagnosed bipolar), and they rapid cycle with very obvious highs and lows.

    I'm sure I will learn to live with not knowing exactly what the issue is, I just don't want to miss anything that will cause long term issues (e.g., seizures). Thanks, everyone
  13. InsaneCdn

    InsaneCdn Well-Known Member

    Are you keeping a detailed daily journal of all the mundane stuff that might end up important?
    sleep/wake times, what he eats, the weather (including barometric pressure), behaviors, events, problems, issues, challenges... ?

    After a few weeks or months, patterns start to show up.
  14. buddy

    buddy New Member

    Q had several eegs, including one in pt. That missed his seizures.

    Finally one doctor really listened to the symptoms and added extra leads in the areas related to those symptoms ....tada! Seizures all day/night .....over and over. They were missed for years even though they were frequent!

    You're right, unless they catch it it never can really be ruled out. Esp with other neuro signs.

    Poor kid!
  15. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I never caught my aspie kid until he was an adult so I cant speak on that part but if your son isnt an aspie it obviously wouldnt hurt him to lose the label if he doesnt have it.

    I really think he needs another evaluation. I would get an eye doctor to check his eyes because I have known several kids who have eyes who do that and it is a muscle in their eyes that cause that. It doesnt happen all the time but can be fixed. It doesnt have to be a stimulant.

    As far as the other stuff. My aspie son was labeled his entire life in school as learning disabled but academically gifted. He was smart as a whip. I would really get your son retested as far as if he does have some forms of learning disabilities and what his accurate IQ is and how that spread is throughout the test. If the school gives you grief about doing the testing again so soon, I would point out that he was tested at a very young age and he most likely wasnt very cooperative at the time. Now that he is in school, he will probably give a more accurate picture. If the school refuses to do it, then see if you cant convince your insurance company to cover a multi-evaluation at a children's hospital.

    I have a feeling you will find some interesting things about his abilities in school. Now as far as behaviors with the attachments I dont know. I dont know enough about your adoption and what went on there to give you any sort of intelligent answers there. I am not an adoptive parent so anything I said would be moot. I wish you all the luck in the world. Hugs.