I am trying to get Rosalie qualified through the Agency for Persons with Disabilities. Chapter 393, Florida Statues, defines developmental disabilities as spina bifida, autism, cerebal palsy, Prader-Willi syndrome and mental retardation. The APD refused to accept the medical and psychological records that I provided that showed Rosalie to have the DSM-VI 299.0 Autism diagnosis. They hired a private and independent psychologist to perform the ADOS test on Rosalie. This was to assure the APD that Rosalie has true Autism (what someone there referred to as ‘plain old vanilla flavored Autism’), and not PDD-NOS or Aspergers syndrome.
The ADOS was performed by a ABA therapist that Rosalie had met in social skills group about a year ago. She was observed for about 30 minutes. During this time she was asked to do various tasks, was observed playing with various toys, and was asked a series of questions. All of this was designed to help the examiner make an accurate diagnosis. There was of course a very detailed questionnaire that went along with the evaluation session. These results go to the psychologist and she compiles a detailed report for the APD. Then they will either say she qualifies or not.
I thought I’d check into the diagnostic criteria for Autistic Disorder 299.0 to refresh my memory and here it is (DSM-IV):
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate orsustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting,or complex whole-body movements)
(d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(1) social interaction,
(2) language as used in social communication, or
(3) symbolic or imaginative play
C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder. From the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV), 1994.
The items I put in bold are the ones I believe Rosalie exhibits.
WOW – So, let me see what Rosalie’s main issues are…
Rosalie will only respond verbally about 30% of the time to familiar strangers (a new person visits with her 3 times, she is considered a familiar stranger.) She makes eye contact on a very fleeting basis – she will only give voluntary eye contact occasionally. She will give fleeting eye contact when prompted. She quite frequently ignores people with no hint that she has even heard them. When pressed, she will generally respond.
Rosalie constantly picks her lips, chews on her fingers or picks her nose. It is like she has to have her hand near her face. She has been weaned from this to a large degree, but she still does it probably 70% of the time while watching tv, and 20% of the time while playing. Thankfully she doesn’t chew on toys any more!
Rosalie has a very unique way of playing with her toys. She lines them up, and then rolls them or throws them. Over the last few years, she has gradually gotten better with her pretend play. She will play appropriately at times – for instance, she will request that I play with her, but the entire time she tells me to ‘come to my house’, then when my toy gets there, she ignores me and my toy and then a few seconds later requests that my toy come to her house again. And over and over it goes. I can encourage her play skills by saying “I want to play hide and seek” and then I turn my toy away and start counting and she will hide her toy. But generally I have to encourage this type of play.
One thing I noticed while sequestered for an extended one on one time with her a few months ago was that she smells everything she eats. She likes mac and cheese, but she will always smell it first. Then, if she doesn’t like the smell, she will not eat it. She also has a food texture aversion. She refuses to eat certain things even though she will ask for them, chocolate cake for instance. She will ask for it, but after she gets the cake she will eat the icing and leave the cake part. She will not eat any other cake-like texture, turning her nose up at many things other children adore. For as long as I can remember, she has been obsessed with apples. She would rather have an apple than a cookie or ice cream.
When Rosalie is excited, she generally jumps up and down, squeals, spins, spits or flaps her hands. She may even start body slamming woefully unsuspecting family members or friends. A bit surprising when you’re 9 months pregnant and you get slammed so hard you fall into perfect strangers. Or when you’re holding a glass of water and get a forceful bump!
Rosalie always had “lightning fingers”. She has always had a habit of putting her face and fingers in others personal space. When she was younger, she would randomly poke people in the eyes. Now that she’s older, she frequently says “tickle tickle tickle” and wiggles her fingers two inches from someones eyes.
And of course, the first thing I noticed when Rosalie was little was her complete and utter lack of communication. She did not verbally ask anything, she did not point. She did not indicate her wishes in any way, shape or form. At 3 years old she only had about 5 words non-family members could understand, and only about 10 word approximations. She did not label any of her siblings until she was nearly 4 years old. Rosalie’s speech has always been the first thing people notice about Rosalie – her unique speech. She talks now, but it is significantly delayed and speaks with a sometimes odd tone of voice. She talks very much like a 3 year old which is deceptive because her understanding and mental level is much higher (she reads, writes, and can do double digit math problems!)
So for now, I sit here wondering – will the experts give Rosalie a once and for all officially official Autism diagnosis or will they say “she’s on the spectrum, but doesn’t have plain old Autism” and deny her services?