Mowat-Wilson Syndrome Behavior Survey Results
Here are the results of the Behavior Survey for individuals with MWS.
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If you would like to participate on this page you can fill out and submit a survey from our Behavior Survey Page or
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Disclaimer - The information compiled below is by no means a scientific study but an informal survey. It is information compiled from the
responses supplied to us from a survey of the members or our MWS Email Support Group. Keep in mind that the range of ages of the people
that the answers apply to is from infants to adults. Many of the answers may change as children grow and mature.
It was created to give those newly diagnosed with MWS a means to get some idea of what others have experienced in the same situation.

Total Number of Respondents to the Survey. - 58 Responses








Has your child had a formal IQ or developmental assessment? Yes 41 No 17        
If yes, what level of intellectual disability does you child have? Mild 1 Mod. 8 Severe 27 Profound 6
Can your child sit up on their own? Yes 50 No 2 A/I* 6    
If yes, at what age were they able to do so?

See Question #1 Below

Does your child walk? Yes 36 No 12 A/I 10    
If yes, do they walk with an unusual gait? Yes 36 No 1 A/I* 11 N/A 10
If no, do they walk? Assisted 7 Walker 2 P/D** 4    
At what age did they cruise?

See Question #2 Below

At what age did they begin to walk independently?

See Question #3 Below

Does your child speak? Yes 19 No 36 A/I* 3    
If yes, how many words? (apx.) 12 or less 13 12to40 2 40 or > 4 Non Verbal 36
If yes, at what age did they begin to speak?

See Question #4 Below

If no, do they use any other means of communication and what form? Pecs 7 Sign 4 Pointing 2 Other 22
Comb. of All 10 A/I* 9        
Have you attempted toilet training? Yes 26 No 22 A/I* 4 S/R*** 6
If yes, what results have you had? None 31 Timed 12 Fully 4 S/R*** 7
Does your child have regular bowel movements? Yes 26 No 19 A/I* 1 S/R*** 12
Does your child feed themselves independently? Yes 7 No 25 Assisted 24 A/I* 4
Does your child dress themselves? Yes 1 No 45 Assisted 9 A/I* 3
Does your child sleep through the night? Yes 36 No 22 A/I*      
Tends to be shy. Not Typical 44 Somewhat 12 Very Typical 2    
Cries easily Not Typical 13 Somewhat 9 Very Typical 4    
Likes to be with other people Not Typical 1 Somewhat 15 Very Typical 42    
Is always on the go Not Typical 12 Somewhat 14 Very Typical 32    
Prefers playing with others rather than alone Not Typical 24 Somewhat 22 Very Typical 12    
Tends to be a loner Not Typical 39 Somewhat 16 Very Typical 3    
Makes friends easily Not Typical 20 Somewhat 19 Very Typical 19    
Is off and running as soon as they awake in the morning Not Typical 19 Somewhat 9 Very Typical 31    
Is very sociable Not Typical 5 Somewhat 10 Very Typical 44    
Is very energetic Not Typical 10 Somewhat 15 Very Typical 33    
Takes a long time to warm to strangers Not Typical 39 Somewhat 13 Very Typical 6    
Is very friendly with strangers Not Typical 12 Somewhat 23 Very Typical 23    
Is somewhat of a loner Not Typical 41 Somewhat 17 Very Typical      
Gets upset easily Not Typical 36 Somewhat 14 Very Typical 8    
Reacts intensely when upset Not Typical 25 Somewhat 14 Very Typical 19    
Hits or bites their self. Never 22 Sometimes 23 Often 13    
Impulsive, acts before thinking Not Typical 23 Somewhat 14 Very Typical 21    
Noisy and boisterous Never 13 Sometimes 28 Often 17    
Poor sense of danger Not Typical 11 Somewhat 7 Very Typical 40    
Repeated movements of hands, body, head, hand flapping or rocking Never 6 Sometimes 23 Often 29    
Resists being cuddled, touched or held Not Typical 25 Somewhat 24 Very Typical 9    
Screams a lot Never 31 Sometimes 20 Often 7    
Avoids eye contact Not Typical 27 Somewhat 19 Very Typical 12    
Bangs head Never 27 Sometimes 25 Often 6    
Bites or pinches others Never 30 Sometimes 17 Often 11    
Chews or mouths objects Never 2 Sometimes 14 Often 42    
Fussy eater Not Typical 30 Somewhat 13 Very Typical 15    
Grinds teeth Never 13 Sometimes 22 Often 23    
Sleeps too little Not Typical 34 Somewhat 14 Very Typical 10    
Sleeps too much Not Typical 46 Somewhat 3 Very Typical 9    

A/I*=Age Inappropriate - **Physical Disability - S/R***=Does not apply due to Ostomy etc.

This survey is the sole property of the owners of this website  Any reproduction or reuse of the survey without the prior written consent of the owners of this website is expressly forbidden unless for personal private use.

Question #1 6-12mo


13-18mo 21 19-24mo 12 25-30mo 5 31-36mo 2 37-42mo 1 43-48mo   >48mo   A/I*


Question #2 6-12mo 1 13-18mo 3 19-24mo 7 25-30mo 11 31-36mo 11 37-42mo 3 >42mo 7 A/I*




Question #3 24-30mo 7 31-36mo 4 37-42mo 6 43-48mo 9 49-56mo 3 57-62mo 1 >62mo 6 A/I*




Question #4 36-42mo 9 43-48mo 2 49-56mo 7 57-62mo   63-68mo   69-74mo   >75mo 2 A/I* 7 N/V


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Mowat-Wilson Syndrome Associated Conditions
Listed Below is a Condensed Version of Our Associated Conditions Survey.
You Can View the Complete List by Clicking Here
If you would like to participate in this survey you can do so by clicking Here

Number of respondents to survey  77  


Childs Gender M 42 F 35 55% M
Clinical or Genetic Diagnosis? C 15 G 62 81% G
Was your child diagnosed with Hirschsprung's? Y 43 N 34 56% Y
Was your child diagnosed with any heart condition? Y 54 N 23 70% Y
Was your child diagnosed with Agenesis of the Corpus Callosum, ACC? Y 41 N 36 53% Y
Was your child diagnosed with Pyloric Stenosis? Y 14 N 63 18% Y
Was your child born with Hypospadias? (males only) Y 25 N 17 60% Y
Does your child have any kidney disorder? Y 17 N 60 22% Y
Does you child have seizures? Y 61 N 16 79% Y

This survey is the sole property of the owners of this website 
Any reproduction or reuse of the survey without the prior written consent of the owners of this website is expressly forbidden unless for personal private use.