Sensory Issues Survey – Who took the survey?

Thank you to everyone who took the Sensory Issues Survey!

This survey received 185 responses from parents who have children with sensory issues. Sensory issues can occur with or without Autism, although it is a very common feature of Autism.

autism and or spd

The children can be grouped as follows:   Has Autism (either with or without Sensory Processing Disorder — SPD) (58%), Has SPD (39%), and Has no diagnosis, but does have sensory issues (2%).


The children represented in this survey range in age from under 3 to over 18, with the majority being in the 3 to 10 age range.

child age

The most common sensory profile reported is a mix of sensory issues depending on the situation and/or environment.   This finding underscores how challenging these sensory issues can be — as it is often difficult to predict and plan for your child’s reaction to a situation or event.

primary sensory profile

62% of parents report that their child is “both a sensory avoider and a sensory seeker depending on the situation.”  Another 27% say that their child is mostly a sensory seeker.   Only 10% mention that their child is mostly a sensory avoider.


Specific sensory issues seen most often are extreme or inappropriate reactions to sound, touch, and taste.     Sensory seeking behaviors like running, jumping, crashing, spinning, difficulty with sitting still, or avoiding movement altogether are related to problems with the vestibular and proprioceptive systems.       Problems with vision or the sense of smell are less-often reported, but still very real for a minority of respondents (For example, my son has amazing peripheral vision…which I feel is an overcompensation for his hypersensitive visual system.)

Specific sensory issues experienced

The next blog post will be about the ranking of treatments for sensory issues and what has worked for parents.

If you are interested in some more background on sensory issues, please see this blog post from last year.


Symptoms and Issues by Type of Autism

Severity of sensory issues

Sensory issues as reported by parents of those with Asperger’s/High Functioning Autism and those who have autism/Classic Autism.  Around 40% of both groups say that their sensory issues are strong to severe (as indicated by a 4 or 5 rating on a 5-point scale.)


I thought I would write another blog post while waiting for results on the sensory issues survey.  If you haven’t taken that survey yet, please do so here:


My survey on sensory issues was inspired by the fact that it is one of the key issues that many people with autism deal with.   Despite the fact that my own son has very limited expressive language, I often find his sensory issues the most frustrating for both of us to deal with!

Sensory issues are a unifying factor across the spectrum of individuals with autism, a top issue for both those with classic autism and those with higher functioning autism or Asperger’s (sensory issues are the #2 symptom only to social difficulties among the higher-functioning group).

Key symptoms by type of autism


When comparing strong to severe symptoms between these 2 groups, some of the things that stand out slightly more for those with higher functioning autism or Asperger’s are things like anxiety, ADHD, eating, sleep, and sensory issues.    Things that stand out more for the kids with classic autism are language issues (by far) and problems with independence (self-help and self-care) which go along with problems with speech and language.

different in symptoms 3

When looking at co-occurring conditions, we see that parents who have kids with higher-functioning types of autism are more likely to report that they are dealing with issues like ADHD, anxiety, OCD, and mood disorder.  It’s also possible that those of us who have kids with classic autism are more focused on speech/language issues and the more basic needs for independence and self-care, and that the issues around attention and anxiety are less of priority.

Co occuring conditions by type of autism


I’m getting close to getting enough responses on the sensory survey to report back soon!    I hope to have to insights on the types of therapies and interventions parents are using to help their kids in this critical area.







Autism Symptoms and Issues Reported by Parents

149 parents of children/adults with autism reported on the symptoms and issues experienced by their children.    Speech and language, social issues, and sensory processing symptoms top the list of “severe” issues experienced by these children. (“Severe” issues are those ranked as a 4 or 5 on a 5-point scale.)

Some of the most concerning symptoms (aggression and self-injury, wandering/bolting, sleep issues, anxiety and depression) are experienced “severely” among only a small subset of these children and adults with autism (28% or less).

Autism Symptoms


Looking at the top 5 concerns among respondents mirror what is seen above:  Expressive language and social issues are most often listed in the people’s top 5 concerns and also are most often mentioned as the #1 most pressing concern facing these parents of children with autism.      About one-third or slighty less report receptive speech/language issues, sensory issues, other speech/language issues, attention issues, and self-care/self-help in their top 5.

Aggression/self-injury and Anxiety stand out as concerns that are more often listed as #1 among respondents despite the fact that these serious issues are typically just experienced by a subset of respondents.

top 5 concerns

Sensory, social, attention issues are almost universal among these children with autism (more than 90% experience these symptoms at least mildly).   More than three-quarters experience at least some level of the following symptoms:  Stimming/repetitive behavior, self-help or self-care issues, receptive speech/language issues, other speech language issues, academic problems, impulsivity, and eating issues.

Despite the fact that Aggression/self-harm is the least-often reported symptom, this is one of the most-pressing issues among parents, highlighting the need to address this problem among the children who experience it.

symptom occurrence and importance

Next blog post:  More on symptoms and issues by sub-group

Last blog post:  Co-occurring conditions with Autism

Co-Occurring Conditions with Autism

Autism is typically not a standalone diagnosis…According to the survey results (based on reports from 188 parents of people with autism), most of those with autism have some other “co-occurring” condition.      One-third (34%) have 1 co-occurring condition, and another third (35%) have 2 or more co-occurring conditions.   The final third (32%) do not report any other diagnosis or disorder.



When looking at the specific co-occurring conditions that are reported, anxiety and ADHD top the list, followed by OCD (obsessive-compulsive disorder), apraxia of speech, and mood disorder.  Given that the three “prongs” of an autism diagnosis are speech/language difficulties, social issues, and repetitive/unusual behaviors, these co-occurring conditions are not surprising.



20% mention some “other” specific co-occurring conditions with autism, shown in the word cloud below.      Most of these comments mention sensory processing disorder (SPD) and specific speech/language issues like articulation issues, phonological disorder and echolalia.


Next blog post:  A look at Autism Symptoms

Last blog post:  More on Progress

More on Progress

By Diagnosis and Co-Occurring Conditions…

Not surprisingly, I discovered that parents are more likely to report their kids making strong progress if the child has an Asperger’s, High-Functioning Autism, or a PDD-NOS diagnosis.   The progress rating is lower among those with Autism or Classic Autism (36% give a 7 or higher rating on 10-point scale).



Also, the more co-occurring conditions a child has, the less likely the parents are to report a favorable progress rating.



When looking at specific co-occurring conditions, some of these conditions appear to have a more significant impact on perception of overall progress vs. others.  Parents who report that their child has Apraxia of Speech or Epilepsy show lower progress ratings on average (Caution: these sample sizes are small, <30.  Progress ratings of 7 or higher were compared.)

Progress ratings for children with co-occurring conditions like ADHD and Anxiety disorder are similar to the progress ratings for those who do not have any co-occurring conditions.



Progress by Co-Occurring Conditions




Next blog post:  More on Co-Occurring Conditions!

Last blog post:  Progress (from a parent’s perspective)






Progress… (from a parent’s perspective)

This blog post is about progress, the main “thing” that all of us autism parents hope for.

The question in the survey was: Since the initial diagnosis, how would you rate your child’s overall progress in terms of improving on the various symptoms of autism?  (Using a 1-10 scale, where 1 = “No progress at all” and 10 = “Excellent progress”)

Looking at this question by age group shows that the perception of kids making progress increases as the child gets older. This is good news for all the parents with younger kids – some data to back up what you may have already heard frequently — “It does get better!” – at least for a sizeable percentage of these kids.



However, when I change the chart and look at progress by the number of years post-diagnosis, we see a slightly different story.   It looks like the most progress is made by those who are 5 to 12 years out from an autism diagnosis. The percentage who give a top-3-box rating actually drops among those who are 13 or more years out from diagnosis (the top-3-box is the percentage of parents who say that their child has made excellent progress or give an 8 or 9 rating on the 10-point scale):


I found this to be somewhat of a bummer since my son is almost 12 and we are close to 10 years since his autism diagnosis at age 2. I guess I was hoping to see even more progress being reported by parents as time goes by. But then I realized that something else was probably going on.  Expectations should increase as we move away from the point of diagnosis, so the “progress” is measured against these higher expectations.   Also, there probably comes a time when parents are more likely to “accept” the current status quo and are not working so hard for “progress” – at least not as much as parents of whose kids were diagnosed more recently.

Next blog post: More on Progress: by co-occurring conditions and by type of autism

Last blog post: Therapies and Interventions: ABA is on top





Therapies and Interventions: ABA is on Top

Among all the parents surveyed, ABA (Applied Behavioral Analysis) stands out as the only therapy that a majority of respondents say has helped their child make “Excellent” or “Good” progress.   All other therapies show similar ratings of less than half saying “Excellent” or “Good.”   I was surprised at how similarly all the other therapies and interventions were rated, with only academic tutoring falling below the 40% mark.

(Background on this research project can be found here.)


When asked to rank therapies/interventions, the top 5 interventions overall are Occupational Therapy, Speech Therapy, ABA, Social Skills groups/therapy, and Medications to treat behaviors, anxiety, or ADHD.   ABA has the highest percentage of people who list this in their top 5 who ranked it as the #1 intervention.


Less than 30 parents in the survey have used the therapies and interventions shown on the next chart, so these results are less reliable with these smaller sample sizes. It is interesting that RDI (Relationship Development Intervention) and Neurofeedback receive high ratings, but we need to be cautious because of the small number of parents doing the evaluating. (Personal note: I have done RDI with my 11 year-old son and have found it to be very helpful with things like co-regulation of behavior, social referencing, and non-verbal communication.   One major benefit is that we don’t any problems now with him wandering or bolting too far away from us when in public.)


The survey is still open!  Would like to have more responses in order to look at the information by diagnosis, time since diagnosis, age of child, etc.  So if you haven’t completed the survey please do so at:

Next blog post:  Progress of children with autism over time

Last blog post:  And the results are in… (Summary of who took the survey)


And the survey results are in…

These are just preliminary results as I really hope to get more responses to the survey.   But here is where the survey stands in terms of who took the survey and how they describe their children with autism (please click here for some background on this research project).  It looks like these initial results are in line with other research I’ve seen.

  • Most of the survey respondents have only one child with autism – 13% have 2 or more children on the spectrum:


  • The ages of the children with autism represented in this survey are evenly spread over 3 age groups: 34% are age under 5, 31% are age 6-11, and 35% are age 12 or older.


  • About half of the respondents say that their son or daughter was originally diagnosed with Autism or Classic Autism.   The other half have other diagnoses like High-functioning autism, PDD-NOS, or Asperger’s.


  • Many of the parents surveyed say that their child was diagnosed with autism at the age of 2 or 3.
  • Parents of kids with Autism/Classic Autism are more likely to be diagnosed at younger ages.



  • Respondents are more likely to say that their children with autism are boys.
  • The survey respondents are also more likely to live in the US. 13% live in a country outside the US.



The survey is still open!  Would like to have more responses in order to look at the information by diagnosis, time since diagnosis, age of child, etc.  So if you haven’t completed the survey please do so at:

Next blog post:  Evaluation of Autism therapies and interventions

Survey Details

The first survey can be found here:

  • Survey currently has 179+ respondents.
  • Respondents report to be parents of children with autism (person with autism can be any age)
  • Caution should be taken when trying to apply survey results to the general population.   Survey respondents are self-selected; they were recruited via a survey link provided on a variety of autism-related groups on the Internet.