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

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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.

number-of-co-occurring-conditions

 

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.

specific-co-occuring-conditions

 

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.

co-occuring-word-clouds

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).

progress-by-autism-diagnosis2

 

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

progress-rating-by-number-of-conditions

 

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.

spider-progress-chart3

cooccuring-conditions2

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.

progress-by-age-4

 

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):

progress-since-diagnosis

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.)

excellentgoodprogress7point

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.

ranking-of-therapies_interventions

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.)

excellentgoodsmall_7point

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:  https://www.surveymonkey.com/r/autismparentdata1

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:

number-of-children-with-autism

  • 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.

age_child_autism3

  • 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.

original-autism-diagnosis

  • 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.

age-at-diagnosis

age-at-diagnosis2

  • 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.

gender

country

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:  https://www.surveymonkey.com/r/autismparentdata1

Next blog post:  Evaluation of Autism therapies and interventions

Survey Details

The first survey can be found here:  https://www.surveymonkey.com/r/autismparentdata1

  • 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.

Welcome to the Site!

Are you an autism parent or caregiver?  Complete the survey below.  Results will be shared back with you!

https://www.surveymonkey.com/r/autismparentdata1

When my son was first diagnosed with autism, I remember thinking how unique he seemed to me compared to the other kids I knew (and how unique those other kids were too!)   I wanted a resource where I could find other kids like him, with a similar constellation of symptoms, and talk to the parents about what worked and what didn’t help.    I think we all can agree that autism is not a “one size fits all” disability.

Now, almost 10 years later, I don’t think a lot of progress has been made on this front.  My career is in market research, so I thought I would start surveying parents and caregivers on a regular basis.  My primary goal is to establish a single source of information and insights gleaned from the people in the trenches trying to help their kids.    I am also planning on segmenting and cross-tabbing the data  (market research terms!) to see if there are any insights that will help parents and caregivers with their own very unique kids.

This is the first step in this process.

Click here for the first survey or copy and paste the following link in your browser: 

https://www.surveymonkey.com/r/autismparentdata1

Please complete the survey and come back soon for updates on the results.   The more responses the survey gets the better and more valuable the data will be.   Follow this site on Facebook in order to get links to results and opportunities to participate in future surveys.

Please share the survey to people you know who would be interested!

Thanks for visiting!!

Ellen