Posted September 19, 2013 by unstrangemind in Uncategorized. 14 Comments
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Autism and the DSM 5: Part 4 – Diagnostic Criteria: Section C
Posted by A Quiet Week on September 19, 2013 at 9:02 am
Thank you so much for writing about this in such detail. It feels wonderful to meet other autistic adults and read their experiences. I appreciate the time and energy you put into posts.
Posted by Jill Zimmerman on September 19, 2013 at 10:44 am
Yes! Beautifully expressed. I love it.
For me, much what you say here transcends autism and applies to the entire continuum of ALL human behavior – we all have good days and bad days, social days and solitude days depending on all sorts external and internal struggles. I wonder if many non-autistics understood that they have this in common with autistic people (those both visibly and non-visibly manifesting) perhaps they would treat them with more respect. To me, it is kind of offensive when an autistic person (or a parent of an autistic person, like myself) is asked to give “proof” before being given understanding and acceptance.
Thank you for sharing this!
Posted by unstrangemind on September 19, 2013 at 1:26 pm
What you say makes a lot of sense, Jill. Something I often say about autism (usually in response to either a friendly comment like yours that points out that “we’re all like that” or to an unfriendly comment that tries to erase autism or deny an individual’s diagnosis, saying “that’s not autism because everybody’s like that!”) is that everyone faces the same challenges, but with autism the challenges are different in intensity and frequency.
So, for example, everyone gets agitated when exposed to annoying sounds. But the person with autism often gets agitated with much less measurable input than it takes to agitate a non-autistic person and the person with autism tends to experience that agitation not only more easily and often more intensely but also more often — sometimes as often as several times per minute, depending on the sensory issues the individual is living with.
But, yes, exactly! We really *are* just like other humans. Our differences are definitely differences of intensity and frequency but not really so much in actual type, once you get a good look at why it is we do the things we do.
Thanks for reading and commenting!
Posted by Jill Zimmerman on September 20, 2013 at 2:26 pm
yes, it’s the sensory issues that set autists apart. It’s often too hard for a non-autistic person to imagine what it would feel like to have an autistic brain. I find it ironic that many NT people are misinformed and are told autistics have trouble feeling empathy, when it’s actually more often the other way around.
An aside —
This past summer, I watched a rather silly movie on Netflix called “Senseless” (not about autism, just a slapstick comedy). In an weird way though, the film kind of gives a perspective of life with hypersensitivity is like. http://www.imdb.com/title/tt0120820/
Have you seen it?
Posted by unstrangemind on September 20, 2013 at 7:11 pm
I haven’t seen it, but I added it to my Netflix queue. Thanks!
I have lots of days where I have too much cognitive misfiring to get anything productive done and those days I tend to lay in my hammock and watch silly things – sitcoms, reality TV, comedy movies. This will be perfect for one of those days.
Posted by autisticook on September 19, 2013 at 7:04 pm
I have to admit, criterium C scares me. Not your explanation of it, which is beautiful and very clearly worded.
But I’ve just had my childhood history taken, with the diagnostic therapist questioning my mother about my childhood, and… well, in my family my behaviour was considered pretty normal. My father and mother are both like that. All my mother’s siblings are like that. About half my cousins on my mother’s side are like that. My paternal grandmother and one of my cousins on my father’s side are like that. My brother is like that.
Books. Books books books. Not many friends (my mother didn’t have a single friend for as long as I can remember). Friendlier with teachers than with classmates. We’re all picky eaters. VERY picky eating in my case. Highly aware of even the smallest sounds (on holiday, we always avoided cities, and we went hiking in the forest or on the moors nearly every weekend). Routines, like setting the table in a very specific order, or spending hours organising our Lego. Collecting things (my dad currently has 5 ongoing collections in the living room and another 3 in the attic. I only have 4 total at the moment. My brother had 3 last time I counted). Constantly quoting things at each other and having hour long discussions about solar energy or the economy of Micronesia. It all adds up.
So what is my mother going to say when the therapist asks her “was your child behaving normally?”
I’m scared that on that criterium alone, I will be dismissed and kicked out of the spectrum. So scared.
Posted by unstrangemind on September 20, 2013 at 7:39 am
Do you have an opportunity to mention to the therapist that you believe your whole family is on the spectrum so that the therapist will be cued in to asking more specific questions rather than asking your mom to make a judgment call about what “normal” is? I think they do that anyway (I don’t know because I’ve never been interviewed by a professional as the parent of an Autistic person) but maybe it would be a good idea to mention.
My mother and my father would probably have different ideas about what my childhood was like because one noticed some things and the other noticed other things. And my mother is not on the spectrum, but my dad is pretty textbook Asperger’s although he has never been evaluated or diagnosed. So that, too, would make them see different things.
But, yeah, definitely mention that the whole family is pretty Autistic before that parent interview. It will help the therapist to target the questions better. And most professionals who are used to working with Autistic adults will spot the traits in them when they talk to them. (And that makes more of a case for you because autism tends to run in families.)
Posted by autisticook on September 20, 2013 at 10:41 am
Thanks for the advice! I should have thought of that before the interview. Although I don’t know if that would have helped since the therapist doing the childhood thing was someone I’d never seen before. But I’ll work out a way to bring it up in my next interview (make a script because otherwise I’ll feel too self-conscious about deviating from the questions). Thank you for the tip!
Posted by Jill Zimmerman on September 20, 2013 at 9:27 am
I ran into this issue when I had to “prove” an impact on academic performance before my son could qualify for special services from our school system. I see this as the equivalent of “proving an impact on everyday life” like in the DSM-5. School is his job right now – so to speak – an important part of his everyday life.
For eight years we could not “prove” any such impact because he was so intelligent that he scored very well on the standardized tests. I found it very sad that these test scores were all the mattered to the school and not the fact that he was crying and hiding under his desk to avoid a chaotic classroom and confronting one horrible teacher who refused to believe he was anything other than defiant when she tried to get him to stop stimming. (He had been hand fidgeting so much that he made a mess destroying erasers and whatnot – which was rather messy. She could not accept this was a stim because it didn’t match what the other autistic student -who had an IEP- did as a stim. To that teacher, it just seemed like my son was “defiant”.)
We had been through two child studies in kindergarten – one initiated by myself prior to starting, one by his kindergarten teacher later that year, then another in second grade – again initiated by the teacher, and we had complete private psych eval done that recommended IEP/504, but were still denied because we could not “prove impact”.
Finally, when we reached middle school he stopped talking almost completely in the school building except for the bare minimum necessary (almost selective mutism). He had virtually no interaction with classmates – even ones that he had been friends with in elementary. Finally, we had our “proof” that the sensory overload of the school setting was “impacting his performance” in the classroom. Our 4th Child Study meeting resulted in accommodations, that have been slowly helping improve his communication at school.
Part of me is still bitter that we spent so many years without help from the school and for all that stress my son had to suffer through, but I am mostly upset with myself for not advocating harder. I just didn’t understand it all myself. I am grateful that we are finally on track and he has some very simple accommodations in place at school (less homework, quiet places to work, a pass to avoid the cafeteria, etc), as well as an IEP for pragmatic speech delay. I am hoping the speech therapy services and these 504 “instructions” that follow him throughout the rest of his school years will help him get the acceptance he deserves and to be able to share his unique perspectives and intelligence with others more easily and comfortably.
I’m not sure if this helps your situation, but know that “impact on your day to day life” goes way beyond your at home behavior. My son is very talkative at home and has a wonderful close relationship with his younger NT brother, in the home setting (except for the stimming) it would be hard for an outsider to see any “impact”. That “but may not become fully manifest until social demands exceed limited capacities” part at the end of criteria section C totally covers this I think.
Posted by Jill Zimmerman on September 20, 2013 at 9:36 am
I took way too long to say all that (please excuse my rambling). I should have gotten right to the point about section C, particularly the:
“but may not become fully manifest until social demands exceed limited capacities”
That is the part that covers your “normal-for-in-your-family” childhood. The outside “social demands” that exceeded your capacities may have come later in life.
Posted by autisticook on September 20, 2013 at 7:15 pm
Yeah, it’s what I keep concentrating on, I had such a supportive home and school environment (plus the fact that I was pretty adept at figuring out solutions) that any problems I ran into were pretty minor overall. I didn’t have much interaction with other kids my age, but I had a very close relationship with my younger brothers. I also had a lot of adults in my life that I felt extremely close to. it’s only now that I’m 36 and running into some very problematic things at work that I can show that yes, this is an impairment. But I was such a happy kid, with so few problems… that I’m definitely on my way to not qualifying as autistic. Simply because I had the supports *before* any persistent problems could manifest itself. I have been so incredibly lucky.
Posted by autisticook on September 20, 2013 at 7:17 pm
But as I told a friend today and which Unstrangemind talks about as well in her next post on Section D (which I still want to comment on), take one of those supports away and my entire life comes tumbling down like a house of cards. I nearly lost my house this last June/July because my bank had blocked my direct debit for a couple of months, meaning my mortgage didn’t get paid on time.
Posted by Jill Zimmerman on September 21, 2013 at 10:28 am
could you still use the family supports? How do you feel about asking them for help from time to time? (I’m not autistic myself, but I still go to Bank Of Mom when unexpected financial needs come up. My whole family does.)
Posted by Recommendations: DSM-5 ASD Criteria Analysis | tagAught on October 4, 2013 at 3:08 pm
[…] Autism and the DSM-5: Diagnostic Criteria (Section C): Section C covers the timing of symptoms. U.M. considers this section huge, because it recognizes that symptoms may appear different at different stages in life. […]
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