The Assessment

Post Reply New Topic

This has been the longest year of my life. I posted nearly one year ago needing advice/support in dealing with my young adult son who had been having increasing problems which culminated into a meltdown that got him charged with a misdemeanor for battery...... Since then, much has happened. Long story short, he's now in a safe place, I'm treatment guardian and he's doing reasonably well for the time being.
The outpatient clinic where he's being seen on a regular basis felt it a reasonable enough measure to refer him to a neuropsychologist to be assessed for Asperger's (or anything else which might seem a more appropriate diagnosis). I'm not sure if they based their decision on my belief that he's an Aspie or if it has to do with one of the hospital psychiatrists' opinion that he was succumbing to "severely debilitating OCD which can make a person seem psychotic" and mentioning to me that it might have something to do with an ASD.
Either way, I'm very pleased to finally be waiting to have this assessment done. Not just for me, but I believe that if a competent and impartial expert tells him why he reacts to things differently than many other people, or handles stresses differently and puts a name to it, that maybe he'll not second guess himself often and maybe he'll be more secure in knowing that there's a reason he processes things a certain way, and sometimes cannot process stimuli.

So, I was wondering if anyone, as someone who's had such assessments for themselves or a loved one, can give me insight into how the assessments are done? Also, if they've had the assessment and gotten unexpected results. (we're not certain if he's got any sort of ASD or if it's something else).
Did putting a name on your differences make it easier to understand yourself? Did it help you to manage any (if any) negative or disconcerting affects of your mood or ability to handle stress or overwhelming stimuli?

I truly hope my questions aren't offending in any way. Sometimes my wording might seem reasonable in my view, but aren't to another.

It probably varies based on the age of the child and the place you go. My son was diagnosed in kindergarten, and by the top autism clinic in my US state (we happened to live in the city where the state university's medical center is located). In our case, the assessment involved:

1) questionnaire filled out (in advance) by me, a daycare employee, and a public school teacher who all spend considerable time with my son in advance)
2) a super-detailed medical history filled by me in advance in consultation with my and Dad's families (back to great grandparents, and including all 2nd/3rd degree relatives that would appear in such a fmaily tree).
3) another questionnaire for me, trying to remember the ages at which my son hit development mileposts in infancy/early childhood
4) complete physical exam of my son
5) full age-appropriate IQ test for my son
6) structured social play testing (in which a trained tech engaged my son in play according to some predetermined scheme), which was recorded and viewed/scored by a psychologist
7) observation of my son throughout the day of testing
interview with me covering my son's adaptive skills (that is, what day to day activies he cannot do, can do with difficulty/much prompting, can do well, does independently and well without prompting)



Frankly, when the public school suggested my son be tested for autism and my pediatrician said she'd recommend going along, she had wondered too, I thought they were all nuts. Seeing all the pieces of the assessment and hearing the psychologist explain specific behaviors she saw in my son (that I saw too) which fit the diagnosis made me believe the diagnosis, and understand it better. I also did a lot of reading, once I had the diagnosis, which made me even more confident in the diagnosis.



For me, it was a relief to have a clear, actionable explanation for what was going on with my son. He had been suspended from school for violent, "out of the blue" attacks on other kids and engaged in other troubling behavior directed at classmates. This had been concerning for me because at home and in play situations in which I had seen him his whole life, my son tended to be gregarious and kind/ friendly, I had never seen him do anything like the things school described. So I never had the grief phase some parents describe after getting a diagnosis, it was onwards to IEP planning to ensure school would no longer stress my little guy out beyond recognition.

We moved schools after kindergarten (for reasons unrelated to the diagnosis). The new school and having an IEP based on an autism diagnosis has completely turned things around. There are still things that are a struggle, from writing to arguing with teachers to awkward handling of social problems that come up, but the unreasoning, sudden, excessive reactions to others are gone. I am convinced that in his case they happened during meltdowns caused by stress, and he does not get *that* stressed by school anymore - he is given ways to take himself out of stressful situations before they escalate too much, and supports for "problem" subjects like gym and writing which allow him to participate and learn from them withough stressing him out unbearably.

Thank you. I was hoping that my son's assessment would be soon. Complications kept him from his appointments two times, sadly. I've been hoping to have an answer by now, so am finding it difficult to accept waiting until mid-November. But, after speaking with the doctor's assistant a bit more, she tells me that the doctor uses mostly hands on activities and an in-depth interview, plus input from family members in his methods. I was also reassured by a few sources that the doctor is one of the best in the state, and well worth waiting for. I had considered trying to find another doctor that could see him sooner, but maybe it's all for the best. My son seems to be doing well where he is, and the longer he's taking meds which ease his severe ocd, and is on a set routine the better. I'm hoping that by not being in such an acute state of longterm meltdown (for lack of a better way of putting it), at the time of his assessment, the doctor will get a clearer picture of why everyone who knows him well thinks it's an ASD.
*sigh*

For us, this made a huge difference. With my son - we didn't understand the specific deficits. He is fairly social and hyperverbal and we had no idea he had such a severe deficit in pragmatic language. Suddenly, it was like a light went on - I understood why he often misbehaved, since he usually didn't understand what was asked of him.

I am also learning more about myself and how I fit into the spectrum, although I don't have the benefit of a diagnosis. I realize that I had poor pragmatics as well, but learned to manage it by getting a degree in Drama with a focus on script analysis (which is basically what you do in pragmatic speech therapy.)

DS and I both have some undiagnosed tendencies towards OCD as well, and we are finding these more manageable with some of the basic theraputic techniques, like re-framing, etc.

If, as a parent, you have an idea of what's going on already - I think a diagnosis helps you communicate your needs. Sometimes, though, a diagnosis can uncover specific problems you didn't know about that you can now address, and that's like a lightbulb going off. I suppose there are still other ways to react to a diagnosis, but those two make sense to me.

I must say, I don't know how to approach all the issues that relate to what's been going on with my son, and how it affects my family.

We're all pretty sure that he's Aspie, but without a formal diagnosis I hesitate to post on ASD forums. What if the neuropsychologist says it's something different after all? There is a much different way to approach care and relating to a person who is Aspie as opposed to some other mental health condition.

On another note: I think it's time for me to have my own assessment, to have my own official diagnosis. Not just for my own peace of mind, but thinking that it may help my son relate better to himself knowing he's not alone with it.

My firm belief has always been that the diagnosis DOES NOT MATTER. This doesn't mean a diagnosis isn't a valuable tool, it's just that it only provides you some understanding (if it's correct) and a direction.

What matters is WHAT YOU DO. If the accommodations and interventions for autism make your child and family's life better, use them. You don't need to wait for permission (well, unless you opt for medication, then you not only need permission but I'd get a second opinion just for due diligence's sake.) Try some techniques out, give them an honest effort for a while, step back and see if they work.

I was skeptical for years at the diagnosis of AS my son received from his school. It was poorly done to begin with, but also, they simply stuck the label on him and walked away with some minor accommodations that didn't help much. Once we got a real diagnosis from a diagnostic team that understood autism (headed by a developmental pediatrician and a neuropsychologist, a good way to go for that) we not only got a label, but a collection of techniques we still use today that CHANGED OUR LIVES.

We found out that our poor son was trying his absolute level best, but was just incapable of behaving given the challenges he faced. Once we started making sure he understood what was being asked of him (for instance, by offering visual prompts, to-do lists with the tasks properly sequenced, and pragmatic speech therapy) we were able to see what was going on. We changed from being frustrated authoritarians vs. a misbehaving child (something I wish I had a time machine to go back and change) to a family team.

Your child may or may not be on the spectrum, but while you wait, it's worth figuring out if there are any parents here who have experienced some of the specific problems you are having, and see if what they did works for you.