Bad Experience with a Special Needs Clinic

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I had a bad experience with a special needs clinic and want to ask for others' ideas about whether it's my imagination that they were wrong or whether I should bail from trying to get help from them.

I'm a very high-functioning Asperger with a professional degree. I mostly have trouble with social conflict and with organizing and structuring my activity. My inability to manage social conflict makes it practically impossible for me to work in a professional workplace because people always screw with me. I'm a female Asperger... I've seen male Aspergers fly under the radar with weird behavior but people seem more critical of females with professional degrees. I always end up with someone picking on me or harassing me -- a couple have been real sociopaths -- and if I don't react I get bullied and then ultimately run off, and if I do react I get creamed with some retaliation or group hostility. I'm currently not working.

So I get into this excellent clinic for special needs at Johns Hopkins, a very good medical facility.

First thing is an hour-long "assessment". This woman shakes my hand and takes me into a room where she asks me all kinds of questions and fills out a questionnaire on a computer. After a while, I notice she's not filling things out consistent with my answers.

As an example of her filling out the form inconsistent with my answers, I notice that she fills out a question "Do you have a habit or problem with repetitive movements" as "no" even though I told her about my leg jogging, lip chewing, knuckle chewing and other things I have to do constantly -- I have to do one of these constantly or I get very stressed. I asked her why she marked "no" for that question and she said "Well that is for stimming, like hand flapping". I told her that I considered the stuff I told her to be stimming and she said NO, it wasn't.

Now at this clinic, they mostly deal with very disabled people, like low-functioning children. I'm seriously shocked she would think that a high-functioning Asperger adult would have stims that consist of hand-flapping. Am I wrong or is she?

The whole "assessment" went like that... she was second-guessing my answers, comparing them to whatever reference was in her head -- probably a very low functioning child -- and recording the answers on the computer survey differently than what I answered her when she asked them.

Then, after the hour-long assessment, she and I went to speak with a psychiatrist who was doing my intake. The psychiatrist informed me that I didn't have Asperger Syndrome but some other problem (she declined to share her opinion with me). She prescribed me an anti-psychotic, but when I questioned her about the prescription, she was unable to tell me what symptoms she was prescribing it for, what the mechanism of action is (how the drug works) and what side effects it had or improvements I was supposed to see if it worked. I looked it up later, she prescribed a dosage of the anti-psychotic that was extremely small, almost just enough to use as a sleeping aid and not much else. Like a placebo, almost. Also, some other things she said to me were totally wrong about Asperger syndrome.

I know that my doctor at Johns Hopkins had trouble getting me referred over there. I'm wondering if they resented being forced to take a high-functioning adult Asperger, and are full in their schedule with young children who are low-functioning, that they think they can help more. I'm wondering if they are incredibly incompetent, or just have a culture of being sloppy because they deal with disabled people and don't pay attention to professional behavior.

I'm also wondering if I'm the one who is wrong. That adult Aspergers for high-functioning people is basically a non-event and I'm an as*hole or idiot for not being able to function well socially in the workplace. And that my trying to get help with that is a waste of time.

I'm thinking about just cutting them off and not dealing with them anymore and going to regular therapists and training them in Asperger syndrome. The problem with that is that they always try to "fix" my traits that can't be fixed -- like why don't I try to fit in more, why don't I have closer relationships, etc.

I went there when my son was little and I really liked them, but I don't live near there and I wanted to know if my son was on the spectrum or not.

3 years later, this past spring I took him back to see a developmental pediatrition. Long story short. Her report was so awful that I can't even use it. The whole thing was everything I told her, and there were 8 things that were totally incorrect on it. She did 2 small tests which tell me nothing, which took a 4 line paragraph to talk about the results. It also had medical information about me that was irrelevant, and they used language that was totally unprofessional. When I told her about it she said that she already signed off and could not change it, so she could write an addendum and I could feel free to use black magic marker to black out what I didn't want to share with the world. Then I got my addendum and it was missing corrections. Then she sent me for evaluations. I told her I want her to evaluate my son, see if I am focusing on the correct things, and make sure I'm not missing something...basicly I needed her to follow my son and make recommendations. I was very clear I did not want services there, I just wanted him to be followed so I can get appropriate services where I live. I went to 2 evaluations. Both of them were equally as horrible. After explaining that my son is having a lot of anxiety, they tried to push me into sending him to a feeding clinic for 2 months (even though nutritionally he's doing fine, and they didn't seem too concerned about the anxiety) and the behaviorist wanted me to punish my son by a "take away the toy" chart to modify behaviors that my son has been telling me he can't control.

I am so done with John's Hopkins. They are supposed to be the "best", but yet they look at my son as some generic autistic kid and they are pushing generic therapies. I feel like all they want is my money. They did not take into consideration my son as an individual at all. Lets take away his favorite toy, take him away from his home and friends and school and everything he is familiar with and force him to live in a Ronald McDonald House and be force fed food he hates for 2 months (again...he is getting what he needs, he just doesn't eat vegetables) and I guess we'll deal with the anxiety later. I don't think so!

Now they are hounding me because they sent a referral to my pediatrition for allergy testing and I don't want to do it because he doesn't have symptoms, and why stick him with a needle when I don't have to? They even sent me a certified letter but I didn't get it because I was on vacation, however I am curious as to what they feel they need to send me that's certified. I told them to take me off of the list for any more evaluations, and I will continue to do internet/book/other parent/etc research and help him myself. I seriously think I can manage his care/therapy/school better that way.

If your gut is telling you that something is wrong, I would recommend listening to it. John's Hopkins will never get another dime from me.

Good Luck!

Well they can, but they don't have to. Normal people also have lots of different repetitive behaviours. I even once saw a perfectly normal, young woman with high intelligent and great social success and no sensory processing disorder rocking. I was extremely astonished to see her doing that. Then I also saw a non-verbal 'lf' kid juggling for hours. (How many normal people can juggle to begin with?) Certain repetitive behaviours tend to appear in people of certain function-labels or of certain severity, but not with any guarantee which results in that there are autistic people who totally surprise those in regards to repetitive behaviours who attempt to categorise them.

But from that I'd really say





that they seem to know little about the extreme diversity of Asperger's and that you should try to get another real specialist that knows what autism and Asperger's are in essence, not just what a few presentations of it look like if possible?

Though there are of course a variety of reasons for having repetitive behaviour that do not all connect to autism spectrum disorder, I think it's strange if that person doubted that your behaviours can be a form of repetitive behaviours without testing you in-depth.

MommyJones, thank you thank you thank you! I'm so lucky someone with Johns Hopkins experience answered my post.

I would say your experience sounds totally believable after my 3 hours at Johns Hopkins last week.

I also called my psychiatrist who has been treating me for social anxiety and depression from time to time in the past 12 years, and he's a generalist and he said that the things they said were incompetent.

Thank you so much for answering my post MJ and sharing your experience.

Thank you for your opinion and feedback, Sora. I remember how intelligent and well-informed your diagnostic posts are.

I got a lot out of your answering my post. I agree that the big thing for me is not that she felt my answers were not AS symptoms, but that there was no way for her to know given that she was simply asking me questions for a survey (her back was even turned to me as she was at a computer). I mean, she even marked that my father had no history of mental problems when I answered that he had social problems all his life that he was got treatment for all of his adult life, but that he never found a diagnosis that fit or solved his problems. He is currently living alone in Arizona out in the desert!

I will spend a day reading around wrongplanet again, to see if I'm off-base in what I think are my AS symptoms. I don't have the in-depth diagnostic insights you tend to have, but I'm not that ignorant about Asperger Syndrome!

Thank you for your opinion, Sora.

You are both wrong. You are correct if you infer that many high functioning people with AS might be motivated to avoid very obviously “odd” stimming behaviors in public and that many such people can achieve quite well in this area given sufficient determination. I very rarely “flap” in public for instance, although I sometimes slip and I no longer even try to hide this behavior from the people I cohabit with.

However, this assessor is very obviously wrong and we need look no further than the vagueness of the DSM criteria to establish as much. If the category of behaviors that constitute the sterotyped repetitive “non functional” behaviors were so very limited and bounded as this person is inferring (rather than being relatively unbounded other than through the limits of motor range possible within the constraints of human physiology), then it would not make sense to word the criteria so very non exclusively and so openly inclusively. A simple list type arrangement or explicit specifications would be possible, most efficient and obvious best practice if these behaviors were more specific than the DSM describes.

If it were, it would defy good sense to_do anything more than cater to needs and ensure adequate protection and reasonable expectations until one reached this adult “non event” stage. What is the purpose of early intervention if the whole issue resolves into a non event in adulthood? That would not only be an extraordinary waste of resources, it would be cruel and inhumane to subject people to all this onerous “therapy” and intervention if their issues will become non events (and thus non issues) simply by virtue of reaching adult hood.

I would say these people don't look liek specialists, but if their specialty is children withs evere autism, it would be logical that they won't recognize an highly-capable Aspie adult (and especially a female since you might present even more atypically). It's also strange that the pschiatrist would prescribe an antipsychotic without any idea why. I mean, antipsychotics have some use in some people with autism (curb severe irritability/meltdowns and for a few help with sensory stuff), but if you aren't experiencing these, there's no reason why you should be on one. Besides, if the doc has ever prescribed an antipsychotic before, for any indication, they should know the main side effects and should tell you (except that she may be hesitent to tell you all side effects, as to not freak you out).

"High-functioning Asperger's" is kinda like "high-functioning dead".

But anyway, adults and children with AS don't usually flap their hands noticeably out in public, unless overwhelmed or excited, but it's usually a LFA thing (it's rarely there in HFA too).

Anyway, that's (hand flapping) only a tiny point of the picture of AS.

Yeah, the handflapping is just one little thing. Hey, Eph, has John Hopkins told you what they will do to help with the workplace conflicts? Sometimes it doesn't matter what the diagnosis is if the treatment works and this place is supposed to specialize in autism. Do you mind sharing what they diagnosed you with. If it's too personal I understand. I was just curious about what their plans are.

Once, I was prescribed an anti epileptic by a psychiatrist who almost didn't know me at all.
Without any exam of any sort. Nor neurology nor anything


That doctor seemed to be the kind of doctor that ephemerella saw: more used to very disabled people.
Not the kind you can talk to and get answers.

I think she is so used to seeing childhood autism that she hasn't thought of how things would change as you grew older.

High-functioning Asperger adults can handflap, though. I do, and one day I will probably be high-functioning by any definition except the "has a spouse and family" definition; I don't see why I should stop just because I am going to be employable and off disability one day. I wouldn't be surprised if some people who actually are in that category still flap, maybe in private and when very excited...

That is a typical problem, though. You grow up, you learn a lot, and you begin to subsume your stims into more "appropriate" movements. I stim near-constantly but if I am watching out to be as subtle as possible about it, you may never notice unless you know what you are looking for... finger tapping, twitching, rubbing my clothing, slight rocking... It does not take up my entire attention, most of the time (occasionally it does, when I am tired or there is nothing else to do).

The clinic you went to has no idea how adult AS presents, and prescribing an antipsychotic does not help you very much at all. Even if you had said you had sleep or anxiety problems, there would have been other options.

I really think you should get yourself a specialist in adult AS. The risk of getting a diagnosis when you are actually on the borderline is not nearly so big as the risk of getting misdiagnosed or not diagnosed at all. If you need social skills training, a diagnosis is a good way to get it--though you might also get the same if you can manage to convince them of social anxiety or avoidant personality, both of which are anxiety-based but do respond to skill training.

John's Hopkins Center for Autism and Related disorders does a ton of research, has a great reputation in this area and are supposed to be one of the best places in the country. They should know how Autism in any form presents itself in adulthood. Isn't it their job to help these kids develop into the most fully functioning adult they are able to be?

I will agree that treatment for autism is relatively new and there is a lot that is not known or understood, but when you go there you have a bit of a higher expectation that they should know certain things.

You're welcome ephemerella! I hope you are able to find someone to help you. Hang in there!

I voted Get a regular therapist who you think is willing and able to learn AS and help you.
or at least try to find a place that works more with high functioning people like your self.

Note to self: stay away from Johns Hopkins!

Gonna have to find someplace I can go to find somebody who might know what the heck to do with me.. Or at least stop badgering me into therapies that don't work.

The thing about just finding a regular therapist is that they're unlikely to accept the fact that a lot of traditional therapeutic approaches just aren't effective for aspies. When I try to explain that I've been in so much therapy before and it hasn't helped, they get this weird pride thing going, and start saying things like that maybe I just wasn't seeing a very good therapist before. Then they still want to use all the same methods. Therapy is just too expensive for it to all be about a therapist's ego trip. I'm all about teaching therapists to be better at dealing with things they don't have experience in, but for more than $100 for a 50-minute (usually less, since they'll probably be late..) session? No way!

Sorry you had a bad experience. I've been through similar things with paraprofessionals who should know better but do not.

I think going to a "special needs" clinic that treats children is not going to help you. I'm not familiar with that specific clinic, but
they probably don't know much about the challenges of professionals such as yourself. I have tried to access services
but found they were not suitable. I'm called too high functioning, which basically means I'm viewed as "normal" by people
who deal with children with special needs, even though I have AS and a professional degree as well.

I went to FAU's Center For Autism and Related Disabilities. They wouldn't send me for supported employment because those
agencies aren't used to dealing with someone like me with education and professional experience. There's a service gap
there, but a training gap as well.