Expert: Michelle Fattig - 6/19/2008

Question
QUESTION: Hi there,
I am looking for an unbiased opinion about some problems my daughter is having.  I have an appointment with a developmental pediatrician, however, the earliest appointment is 15 months from now which is the average wait in my area.  The anxiety I am experiencing is killing me and I can't imagine waiting that long to get some type of answer. Just before her 2nd birthday, in March, she had a seizure. She had some stim behavior at that time and didn't seem to be communicating well. We had a neurologist run lots of tests to determine if there is a metabolic problem, epilepsy,etc... and everything came back negative.  She was diagnosed with a language delay and hypotonia (she is only in the 3rd percentile for weight, but normal height).  From a family standpoint, everything came to a screeching halt after the seizure.  I stopped everything I have been doing and spent every waking moment of my day observing and working with her.  It was then that I noticed that she has hundreds of words in her vocab.  Her speech is very hard to hear, and is often said while she is on the move.  She does make eye contact, but not always when she is speaking or when she is spoken to, especially when distracted.  She has problems retrieving the appropriate words and with following directions. She seems to not be aware of reciprocal type language.  She will walk up to someone and say "hi", however, if someone says "hi to her first, she doesn't seem to be aware that she should reciprocate.  She also does not use "yes" or "no" to questions.  Instead, if you ask her if she wants something she will repeat the name of what she wants or ignore you if she is not interested.  She is pretty good about telling you what she wants and gesturing for things she doesn't have the words for.  Her occupational therapist diagnosed her with vestibular and proprioceptive sensory issues as well as some slight tactile issues.  She seems to be understimulated in these areas and is always very busy seeking ways to satisfy them. She is a very easy going child and is not easily upset by things, however, the occassional tantrum happens (but is usually short lived).  My daughter seems very interested in other children, but like a lot of 2 year olds she seems to play parallel. She has never had a regular playmate or a playdate for that matter (other than her 7 year old sister), but she always wants to be included in whatever is going on. She likes to be at parties and in social/public situations.  I have noticed she does a lot of pretend play with her dolls but there is one particular toy which she always lines up the character pieces.  She is not upset if you take away the pieces or mess them up, and she plays with other toys beside this,but she does like to line them up.  My daughter is affectionate and loves to sit on your lap and snuggling.  She is very free with giving hugs but never seemed to like kisses.  The OT has been working on the hypotonia in her mouth and just recently she started giving lots of kisses (may she just couldn't close her lips before?)and eating better! The last thing I need to mention is her hearing.  I have spent hours researching autism and sleepless nights pondering if this is what she has.  Just as I have become willing to accept this may be her situation, the audiologist has explained that she feels there is a mild hearing loss in one or both of my daughters ears.  The audiologist seems to feel that we need to go through an ABR exam (under sedation) in order to determine the exact problem/cause.  Our ENT thinks we should wait and see if the hearing will get better.  Since we are already pursuing therapy, much of our treatment will be the same regardless of the results of the exam.  I have asked the ENT and Audiologist to conference so that we can decide which is the best avenue to pursue from here.  Based on what I have mentioned, can you give any insight?  Could this just be a bunch of problems stemming from a hearing loss or is there more to it?  Thanks for you time, Jessica

ANSWER: It sounds like you have been very proactive in trying to obtain answers and interventions.  Bravo!  Certainly what you have described could be just a bunch of symptoms stemming from hearing or more, but there does seem to be cause for concern, be it just hearing, delays, sensory, social, and or other.  The following is a website for which you can print off the questionnaire and gain insight:  http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist

Also, an autism checklist which I frequently use for my students because it includes both "classic" as well as high functioning characteristics or traits can be found by typing "Susan Mayes autism checklist" into a search engine.


Also: http://www.a4.org.au/documents/Diagnostic%20criteria%20for%20autism%20spectrum%2

The following is another checklist, which I use for students that I am evaluating:

EARLY CHILDHOOD/PRESCHOOL PARENT QUESTIONNAIRE

Name of Child:  _____________________   Date of Birth: ________  Age: _______
Name of Referrer: __________________   Relationship to Child: ______________
Parent/Guardian: ______________________________________________________
         Names         Address          Phone

Date of Referral: ____________
Referral Concern (Please list any concerns about child’s communication, behavior, or development):  _____________________________________________________
______________________________________________________________________
Medical History:
Pregancy: _____________________________________________________________
Prenatal: ______________________________________________________________
Birth: _________________________________________________________________
History of Chronic Illness, Head Injury, Ear Infections, Hospitalization, or Accident: ______________________________________________________________
_______________________________________________________________________
Mother: ____________________________ Father: ____________________________
Siblings: _______________________________________________________________
Family History (Special Education, Developmental Delays, Learning Disabilities, Mental Health): _________________________________________________________
Who lives with the child: __________________________________________________
How does the child relate with:
Mother _________________ Father __________________ Siblings _______________
Family activities: ________________________________________________________
Does the child experience difficulty with peers, extended family, or social settings?
_______________________________________________________________________
As an infant, did the child experience difficulty with colic or soothing (stiffen or pull away when cuddled or stroked)? ___________________________________________
Communication:          
   1) Does he or she respond to his/her name:    Never  Sometimes   Often   Always
     __________________________________________________________________
2)   Does he/she express her needs or wants:  Verbally  Pointing  Pulling  Tantrums
___________________________________________________________________
3)   Does he/she talk like children his/her age? ______________________________
___________________________________________________________________
4)   Does he/she follow simple or complex directions? ________________________
____________________________________________________________________
5)   Have you ever wondered if he/she is deaf? _______________________________
6)   Does he/she seem to hear at times, but not at others? _______________________
7)   Does he/she ever seem lost in own little world or stare off? _________________
_____________________________________________________________________
8)   Does he/she mimic, copy, or like to immitate?  ____________________________
_____________________________________________________________________
9)   Does he/she seem to have lost words, or say fewer words than before? _________
_____________________________________________________________________
Social Concerns:
10)   Does he/she smile at family members? __________________________________
11)    Does he/she smile at strangers or become overly frightened by strangers? ______
____________________________________________________________________
12)    Does he/she prefer to play alone or overly dependent on parent/caregiver for entertainment (you are his favorite/only toy)? ____________________________
____________________________________________________________________
13)    Does he/she get things for self? _______________________________________
14)    Is he/she very independent or overly attached (extreme separation anxiety)? ____
_____________________________________________________________________
15)   Has he/she met milestones early or unevenly? ____________________________
_____________________________________________________________________
16)   Does he/she seem to avoid eye contact or have too much eye contact (watching without mirroring or reacting like a little professor)? _______________________
_____________________________________________________________________
17)    Does he/she often seem “lost in own little world”? ________________________
____________________________________________________________________
18)   Does he/she seem tuned out or uninterested in other children? _______________
____________________________________________________________________
Behavioral Concerns:
19)   Does he/she seem to have excessive tantrums or emotional outburst with little or
     no provocation? ____________________________________________________
20)   Does he/she express frustration or over react to small changes or routine? ______
_____________________________________________________________________
21)   Does he/she demonstrate a lack of understanding in playing with toys (excessive mouthing, banging, lining up, sorting, focus on one part like spinning, or lack of interest)? __________________________________________________________
     _____________________________________________________________________
22)   Does he/she seem to get stuck on things regularly (wants to stick with one activity over any others, watch the same movie over and over, read the same book over and over, or other)? _________________________________________________
____________________________________________________________________
23)   Does he/she have unual attachments to objects? ___________________________
_____________________________________________________________________
24)   Does he/she toe walk or have unusual facial movements/grimacing? __________
_____________________________________________________________________
25)   Does he/she make any unusual hand movements or spin for long periods of time?
_____________________________________________________________________
26)   Does he/she seem overly sensitive to textures or sounds? ___________________
_____________________________________________________________________
If Age Appropriate:
27)   Did he/she babble by 12 months? ______________________________________
28)   Did he/she gesture (point, wave bye bye) by 12 months? ____________________
29)   Did he/she use single words by 16 months? ______________________________
30)   Does he/she seem to have an unusually advanced vocabulary? _______________
31)   Does he/she seem to have an extremely good memory? ____________________
32)   Does he/she demonstrate two-words spontaneously (not echo) phrases by 24 months? _________________________________________________________
33)   Has he/she demonstrated any loss of language or social skills of any kind? _____
_____________________________________________________________________

(3-4 years of age)
Cognitive:
34)   Show him/her a doll or stuffed toy, touch one to a box and have the other  
     pretend to look in the box.  Ask him/her “Which one knows what’s in the box?”
     Response: ____________________________________________________________
     
©Michelle Fattig, Flower by the Water Publishing PO Box 579 Genoa, Nebraska 68640 www.anniebooks.com
Adapted Questionnaire: Recommendations National Autistic Society: What should health professionals look out for when parents express concerns? And ToM “Seeing leads to knowing.” (Baron-Cohen, 2000, p. 5)

Because the waiting list is so long for the pediatrician, you may wish to request a comprehensive multi-disciplinary evaluation through your local school district, including a speech pathologist, school psychologist, and occupational therapist.  Providing the above information for the team's consideration may be helpful in providing a clear picture of your daughter's needs as well as an Individual Family Service Plan for the interventions at no cost to the family.  Also, visit our website for more information www.anniebooks.com and www.wrightslaw.com for more information about school services and parent rights.  Please let me know if there is anything else I can provide.

---------- FOLLOW-UP ----------

QUESTION: Thank you for follow up.  The websites are helpful and I plan to go over the criteria later with my husband to see what he thinks.  I am still having trouble discerning how much of this is caused by hearing loss and hypotonia or if it is autism.  From what I understand, children with hearing loss suffer from sensory issues (as the center of balance/gravity is located in the ear).  This would explain her stim behavior (which is rare these days) and her sensory seeking behaviors. My daughter has met all of her developmental milestones at appropriate times, however, from the time she was an infant I have always had to speak louder in order to get her attention.  What bothers me is that her audiologist feels that, based on the exam results she might have a permanent type of hearing loss, however, most children are born with this type of loss and it was not detected on her newborn screening. She is able to concentrate for up to 10-15 minutes at times and she has good play skills and imitation (according to her OT).  She doesn't smile unless she thinks something is funny or is happy to see you.  I am not sure if it is just too much effort to smile (as she has hypotonia in her mouth) or if it is an a social deficit. She walks around with her mouth open most of the time.  She doesn't seem to be aware sad emotions in people.  She tends to identify with happiness/smiling but ignores sad faces and doesn't feel sad when she sees a sad face.  As far as the recipricol conversation goes, it takes her several seconds to form a response.  While this doesn't seem like a big deal, what happens is that people don't wait for the response and continue talking to her at a rate she can't respond to. She tends to react by talking about things "off topic" or ignoring.  I would not say that she withdraws though.  It is tough to tell if she can hear and process other people's conversational speech, in order to realize that there is an exchange happening. For example, when people greet eachother, both saying "hi", I am not sure if she is aware that both people have said "hi" as it takes her longer to realize that there are even people in the room.  With that said, I have been working with her on this for a couple of weeks and she is just starting to understand it and uses it appropriately from time to time.  Is there any insight that you could offer regarding this?  I am very confused and while the websites are helpful there are a lot of "maybe"s. I understand you probably can't diagnose but if you have a gut feeling, so to speak, it would help me to cope with the problem.  Thanks so much for your time and expertise.  It is really nice to know that there are people out there that are concerned enough to help.  BTW, I have been in touch with the early intervention program in our state.  They are not much help unless your child is over 3 and your are of low income.  They have very little funding and there is a long wait to get therapists.  It is much cheaper and better for us to go through our insurance.  Thanks for the info. in that though!  Sincerely, Jessica

Answer
So sorry for the delay.  I think a comprehensive multidisciplinary evaluation is probably the best suggestion I would have for you at this time.  Also, since autism is a hereditary condition according to most researchers, you may consider completing the "tests" and having your husband complete the "tests" located at:

http://www.glennrowe.net/BaronCohen/MaleFemale.asp

If you or your husband exhibit characteristics you may wish to share this information with your daughter's physician and the evaluation team, as some researchers say if one parent exhibits characteristics or the disorder a child has a 40-60% greater likelihood and if both parents exhibit characteristics, the child may have an 80% or greater likelihood.  I hope this is helpful.  Please let me know if there is anything else that I can provide.