My undiagnosed 12 year old & ASDS Forms...

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I am frustrated.

Last Monday, we had our son at his Psych visit. We were there for med adjustment for his ADHD. His doctor proceeded to ramble on for about 10 minutes about how he determines dosages, we could try this, or we could try that, or we could try these at such & such per pound of body weight. Eventually, I found myself completely tuned out from his ramblings and staring out the window. When I looked at my son, he was doing exactly the same thing. My son's father was there, and kept asking questions like a trooper, but with his ADD-innattentive, I honestly felt as if we were all sitting there wasting time, and getting little accomplished. I poked my son Trent in the elbow to get his attention, and said "Come on bud, let's go." So he and I got up and excused ourselves from the appointment. Keep in mind, in the two years his Psychiatrist has been 'treating' him, he's never ONCE sat and talked with Trent. He treats him according to SNAP form and an outdated assessment done at our local hospital.

After Trent & I left, Keith asked the questions we had written down before we went. He said he kept asking while the Dr. was guiding him out the door. e asked "How do we figure out if our son has a pervasive development disorder?" The Dr.'s response was "....well, let's see how the new meds work." (How meds working for attention defecit have anything to do with diagnosing a PDD is beyond me.) Then as he was shoving Keith out for his next appointment, he handed him two ASDS (Asperger Syndrome Diagnostic Scale) forms.

This is where I'm confused. The forms seemed to be geared for the treating physician to figure out. Options are Observed and Not Observed. So when I'm going through the form, I've observed nearly all these things in Trenton to some degree or another. I have no idea if I'm supposed to fill it out according to what I observe in him right now, at this time ....or if I'm supposed to check OBSERVED as in, I have observed these things in the course of his life.

Is there anyone on here that can help me clarify things? I think I'm going to have to call the Psychiatrist for clarity, but the way he rushed us out the door, leaves me feeling like I'm annoying him with it. And shouldn't he have given me some type of form that was geared for parents to fill out rather than the treating physician? Each question I could answer in 10 different ways depending. This is all very frustrating for someone who's VERY LIKELY Aspergers herself. Grrrrr

TY for an ideas or suggestions.

I would say 'observed' means have you seen indications of this behavior repeatedly over the course of his life.

AS can sometimes present symptoms similar to ADD, but AS is not treatable by medication.

Stimulant meds (for the ADHD) are not tolerated very well by him at all. They do increase his focus, but they are little help in other areas (for obvious reasons) such as anxiety, executive functions, sensory issues, all of which Trent has. He's had many, MANY problems all the way through school so far. He's considered to have a learning disability in Expressive Language. He's now 12, and it just seems he's been bounced around, from Dr. to Pediatrician, to Psychologist for evaluation 3 years ago, to Psychiatrist (Pediatrician was uncomfortable with prescriptions for ADHD) to Pediatric Dentist for sensory issues, to NOW the hospital for 5 fillings that the Ped dentist was unable to fill due to Trent loosing all control of himself (LOOONG STORY!) ......I just feel like we've gotten nowhere. I feel like each Dr. we've seen, isn't looking at the bigger picture. Stimulants now make him tic. Which is just another thing we can throw on the pile. I'm of the opinion that if he doesn't TIC without stimulants, then he likely shouldn't HAVE stimulants. Unfortunately, behaviourally & academically, he's a bit of a nightmare without them.

Thank you for the reply, so you do think the questionairre is aimed at 'over his lifetime' based on Observed/Not Observed?

Perhaps if you can give some examples of specific questions we can give you a better idea of what they might be looking for. In general, I would agree that we are probably looking at a lifetime, but there are also so many things that are normal kid phases and I wouldn't want any of those misconstrued. For example, does your child throw tantrums is a question every parent of a two year old could answer yes to, but is not one every parent of a twelve year old can answer yes to. See where I'm going with this?

You need a different team looking at your son. And I've chosen the word team intentionally. Diagnosis isn't really a single discipline process. You have moving parts and you want to bring them together into an answer that fits with your instincts and makes sense. You aren't there yet; if you were, you wouldn't feel this frustration. I have no idea how to tell you to go about finding such a team; our road was too different from yours. I wish I could help there.

But one thing I believe is that you can and should trust your instincts. If you've researched it and believe ASD is a true possibility, then don't let go until someone listens to you and takes the possibility seriously.

Best of luck. I am sorry it's been so difficult.

I remember some of the forms specifying 'within the last six months'! I would call and clarify it, dont worry about bothering him, your sons correct diagnosis is more important. x x

This can get pricey, but try calling the mental health foundations in your area, and also the children's hospitals. Most of them have programs. Also, a child psychologist that deals with school issues would be helpful. The one my daughter sees has a dual license, school psych and clinical psych.

Oh, and are you in the US? If he has significant behavior/learning issues, it's the school's responsibility to identify what his needs are, and in that process, he'd get a diagnosis.

Psychiatry is pseudoscience, straight up. And no, I’m not a scientologist; in fact psychiatry and scientology are not that dissimilar.

It doesn't surprise me that he not making genuine observations, they are obsessed with arbitrary checklist with no basis in anything. They are poor at a recording data, have no stringent methodology whatsoever.

It isn't so much that prescription meds are bad, it is the fact that meds are prescribed on the basis of psychiatry that is so appalling.

This view is not uncommon among doctors. Some neurologist publically state this, many more privately think this. ADHD is a key example where their authority is totally and plainly misplaced.

If you have a chance be sure to ask a Psychiatrist in what way makes what they do, in any way related to medical science.

Authority comes with responsibility, but psychiatry takes very little responsibility for its actions, instead prefers to hide behind a veil of pseudo-expertise. Mostly running away when you chase them up on what they promised. They shouldn’t be the gate keepers for treatment, unfortunately they are for historical reasons.

Heck they are not even well practiced doctors, even though they studied to become one at one point.

It is funny because normally you would expect psychology to be less scientific and it could be. However it either doesn’t pretend to be or in fact it is more scientific.

If you look at neuropsychology they use standardised test. They don’t pretend they are perfect and they are not. However the way that they are standardised provides for good data, and they are actually good at detecting some deficiencies relative to overal performance if nothing else.

CBT is another example, if practiced properly, is a practical method of addressing some problems, plus as the practice the scientist-practitioner approach they have to record data, whereas in other fields of psychology they categorically refuse, which is sort of where psychiatry is at yet their don’t get enough criticism.

Bare in mind that psychiatrist do a can criticise the above two, or might chose to disregard it when they think they know better.

Most psychiatrist also acknowledge the spectral nature of things but none of what they do actually reflects this.

It worries me that you're giving your son drugs from a therapist you obviously don't trust. It also worries me that you're trying to diagnose your son based on his behavior while on drugs. Take him off the meds for a few months, then find a specialist in autism spectrum disorders and try for a diagnosis again.

I am a newbie on this sight but I knew some, if not all, of what you are feeling and going through. I have to agree whole heartedly with Mage ! I have a 13 year old son that I have been trying to get an accurate diagnosis for for the last 7 years. I wish I could say you wouldn't beleive what we have been through but I have a feeling that you would.

Stay strong. Let your instincts be your guide no matter what they say and they will try to wittle and belittle your position as his parent verses their educations. I have FINALLY found, through shear determanation, a peditrician (after kissing many toads if you know what I mean) that actually listened for more than 5 minutes. She then appologized for her colleges and what my son has been through ! ! She sent us to someone she felt would help and then followed through with my son's care and diagnosis. It took 11 months even with these skilled doctors to get a diagnosis. Just the other day we sat in his office for another appointment after trying medication that we were against but willing to try.
You can imagine our surprise when the doctor and two pychologists sat down and started apologizing for their delay in not collectively coming to a conclussion sooner.

I am not sure that I heard the first few sentences but I know that they were kind, comforting words because I was not use to the sound =) They agreed with no medication, gave us a game plan and we left with hope for a better direction in his life now that we knew that we could atleast give the behavior a name. There was some comfort in that. It really did nothing to change our immediate everyday life but now we knew.

I have to tell you that I even had one highly respected pediatrician tell me she knew the best plan of action - she stood there in front of my son and I and said " When he behaves in a manner that is not becoming to "normal" standards throttle him, and throttle him again until it stops. He will eventually learn to stop the behavior." Of course we didn't listen but it left us feeling very hopeless for quite a while.

There are really good doctors out there. Pick yourselves up, dust yourselves off and keep trying until you find that one that will listen and help. It shouldn't have to be this hard to get help for our children. I cling to the fact that God gave me this really great child with some unique atributes because I am the one that can help him get through all of this mess down here on earth. Hang on to the few good moments while you look for help for the other moments. He doesn't get my love and help for only a short time. He is my child for the rest of his life. God bless, you will be in my prayers tonight =)

I agree with Jenny. If you are in the US, get the teachers involved. My son's teachers were the ones who got us the Asperger's diagnosis. If it hadn't been for the Title 1 teacher continually saying, "Something's going on with this kid" we would still be in the dark. The forms are exasperating to fill out, but even while I was doing it, I started to wonder if they were right. All of the things that I thought were Luke's little "oddities" were actually symptoms that nobody had caught on to. Besides, the teachers see your son every day. They can be really good advocates for diagnosis and treatment.

I'm a little late getting back to this post, I apologize.

Believe me, this worries me too! Unfortunately, I have little trust or faith in any Doctors, which doesn't help the situation. My own executive dysfunction makes it really difficult to understand what to do next in many situations. However, a woman whom I've sort of gotten to know through our kids being in a lot of similar programs, suggested CPRI in London, Ontario. We're Canadian. The psychiatrist referred us, and now we're in the 8 week waiting period to hear back from them. I filled out a bunch of forms, and consent forms that needed to be faxed to them, but then I thought, I'm going to send them a list (a 5 page list) of all the things we've ever noticed about him from the time he was born. I also stated that it was important for them to observe him without meds. According to the woman I know, he may be put into the six week assessment. Which means he'll live and go to school there 5 days a week, and come home on weekends. This will be the most thorough thing done for him to this point, so I'm really anxious for their response.

I am brand-new here, directed to the site by a friend -- we're both researching like mad for our kids.

I wanted to post a book title for you: "Healing ADD" by Dr. Daniel Amen. One of the criticisms above is that the psych community can be a total wash as a resource/field of study. I think Dr. Amen -- a psychiatrist -- would agree, which is part of what makes the book so interesting. Your statement that your son's meds have adverse effects reminds me of the charts shown in the chapters on meds. Dr. Amen describes six different types of ADD and tells *clearly* what can make symptoms worse and why, based on his having read 30,000 brain scans and then treating those people, mostly successfully, through a variety of different meds/supplements/therapies/modalities. Parts of his books have been a revelation as to certain family members' behaviors. In my NOT medical opinion, it sounds as though your son's meds scenario is throughly addressed in the book.

I can identify with your exasperation -- my youngest has dyspraxia/apraxia, dysphagia, and a multitude of sub-diagnoses in addition to the overarching ones (brain malformation, not Aspie or ADD). My eldest is yet to be diagnosed (appointment scheduled), but when he is it's likely going to be a combination of ADD/Aspie (based on now six plus years of reading about both). Sometimes those clinicians are enough to make you wanna tear your hair out. Other times they're a lifeline. If you're not having someone who's behaving as though he's really listening to you, do whatever you can to find someone who will.

Blessings.