Should an adult pursue an autism diagnosis?
If you think you have some of the signs and characteristics of autism, you might question why you would consider getting assessed at this stage in your life? At the end of the day, there is no right or wrong answer to this question, it is a personal question.
What are some of the benefits of getting a diagnosis?
- Getting a professional diagnosis may help you to receive any appropriate funding, support and help you might need.
- Your family, friends and work colleagues (if you choose to tell them) may have a better understanding of you and your needs – and it may allow them to support you more effectively.
- You may have a greater sense of self-identify if you understand yourself – and the spectrum – better.
- You may have a better understanding of your experiences as a child or adolescent.
- You may have increased confidence knowing you are part of a larger group of adults that may be like-minded.
Some adults find that by having a better understanding of the challenges associated with autism, they can use their strengths and develop strategies to support these.
Fast fact: Did you know that people on the spectrum commonly show character strengths such as loyalty, kindness, honesty and a lack of judgement?sourced from; https://thespectrum.org.au/autism-diagnosis/checklist-adults/#should-an-adult-pursue-an-autism-diagnosis?
Sensory processing disorder (SPD) is also known as sensory integration dysfunction (SID) and is characterized by one’s sensory system not responding to the demands of the environment in a predictable manner. Sensory processing disorder is diagnosed under the umbrella of Autism Spectrum Disorders per the Diagnostic and Statistical Manual of the American Psychiatric Association, Fifth Edition (DSM-5). As of the date of this page, there are no standalone diagnosis codes to describe the constellation of symptoms that make up sensory processing disorders without the presence of an autism spectrum disorder diagnosis. In other words, per the current accepted diagnostic criteria, one cannot have SPD without being diagnosed on the autism spectrum. This creates confusion and distress for people, and especially adults living with SPD, who have a negative stereotypical image of what it means to be autistic. And while it is agreed that labels are for soup cans, labels also open doors for appropriate care, provide for research and education, and create comfort and acceptance of diversity in our communities.
Sensory processing disorder in children is well recognized in the autism spectrum disordered child community in 2022, thankfully.
It is, however, still highly under-recognized in adults who are neuroatypical/neurodivergent and in whom another diagnosis or diagnoses is not more appropriate. As a result, adults living with SPD/SPS are often improperly diagnosed and inappropriately treated with medications and therapies that do not work fully.
The newest edition, DSM 5 (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition), published in 2013, involved a comprehensive review of developmental disorders in children. The new broad category ‘Neurodevelopmental Disorders’ replaced the former ‘Disorders usually first diagnosed in infancy, childhood, or adolescence’. These are conditions separate from mental health disorders. The DSM5 represents the most up to date, evidence-based thinking about these conditions, and is a good guide and starting point for all the various developmental disorders.
Why not just depend on it?
Simply put: The ‘processing’ disorders referred to as Sensory Processing Disorder are not to be found within DSM 5.
So what are the processing disorders?
The three are Sensory Processing, Auditory Processing, and Visual Processing and are found within the domains of Occupational Therapy, Audiology and Developmental Optometry, respectively. Here is the definition of each within that domain:
Sensory Processing Disorders: defined by Occupational Therapists, OTs, as “an inability for the brain to properly integrate sensory signals, resulting in an inappropriate motor or behavioral responses”;
manifested by extreme sensory sensitivities; also learning challenges, motor awkwardness, lack of focus and hyperactivity, poor social skills;
strongly endorsed by OTs; with some support from pediatricians.
Auditory Processing Disorders: defined by audiologists as “difficulty in discriminating and interpreting speech sounds when listening caused by impaired bottom-up processing of sounds by the brain, in the central auditory system”; (where hearing itself is normal).
manifested by poor listening skills, slow responses, learning and behavior problems;
audiologists themselves not in agreement how to test this; less pediatric support.
Visual Processing Disorders: defined by optometrists as “difficulties interpreting visual information, such as pattern recognition, whole/part, and foreground/background relationships” (where vision itself is normal);
manifested by poor attention to visual information, restlessness, learning difficulties, frustration;
firmly entrenched in Developmental Optometry; strongly opposed by pediatric ophthalmologists.
In recent years, pediatricians and various subspecialists have finally weighed in on whether these conditions are mere constructs to define variants of other conditions or if they themselves are real. In particular, there was a vigorous debate in the lead-up to DSM 5 as to whether Sensory Processing Disorder should be included as a diagnosable medical condition.
The decision was NO.
But there were many left unhappy (especially within the OT community). Things may change with DSM 6, but we are not there yet. As for auditory processing, there is no consensus in how to test for this among audiologists. It is not accepted as a distinct disorder by speech therapists and psychologists, i.e. as distinguishable from such conditions as language disorders or ADHD. For visual processing disorders, Pediatric Ophthalmologists are firmly opposed to the construct, while Developmental Optometrists are very actively advertising and promoting these treatments.
So, MEDICAL professionals can’t even agree. Why should you consider this as a valid construct?
Great Question. Here is what I do with all this information in practice:
I look carefully for diagnoses within the categories of DSM 5 neurodevelopmental disorders to see if my patient’s clinical profile fits best here. OK, nothing new conceptually, except that the new categories do capture better, and within the one domain, most of what I am seeing in practice.
I consider primary diagnoses that go beyond medicine. Sometimes. We may try on one diagnosis, but with time it seems wrong. Or nothing may truly fit from the outset. I do believe that there are children and adults whose profiles do not best fit within DSM 5, and may indeed be better explained by some type of processing disorder.
My diagnostic and clinical considerations sound like this in my head:
Consider Sensory Processing Disorder: Eg. In an angry child with marked irritation by sounds, touch and taste, or in a child with apparent anxiety and inflexible behavior, who does not respond to good parenting and anxiety management. BUT many of these children actually have high functioning autism, which trumps, diagnostically, any ‘processing disorder’. So think of autism FIRST, and rule it out. The same process goes with adult clients and patients.
Consider Auditory Processing Disorder: Eg. In a child who may appear to have ADHD features, but not across domains (ie. only at school and at the skating arena), or in a child with behavior dysregulation in noisy settings only. In an adult with misophonia, or in whom noises have the power to ruin a day (people chewing too loudly, people whispering…)
RECALL THAT we cannot make a diagnosis of a processing disorder alone, as this is not a medical diagnosis.
Why I say it’s AUTISM SPECTRUM DISORDER most of the time: I consider first if a primary DSM 5 diagnosis may satisfy all of the patient’s needs: For instance, children diagnosed with autism frequently have sensory sensitivities. An OT may concurrently diagnose a Sensory Processing Disorder and provide useful therapy. But autism is the primary medical diagnosis. OR, and adult who is clearly neuroatypical and in whom the criteria are even mildly met for autism spectrum with primary presentation being sensory concerns, a “spectrum” diagnosis, when true and accurate to the letter of the diagnostic criteria set forth by the DSM 5, opens doors for treatment and therapeutic assistance.
The desperation and frustration parents of affected kids and adults who’ve never been properly diagnosed feel regarding unsolved issues absolutely inspires action. But this mandate to act in a responsible physician does not in any way endorse spending valuable time and money on chasing a red herring or in sanctioning unproven treatments. Yes, I am a State of Washington Licensed naturopathic physician and a Licensed mental health counselor which might conjure images of unproven therapies and tons of supplement sales. I regret that is the stigma of my profession owing to UNLICENSEABLE “Natural Doctors” in states that don’t regulate the profession, but that is not my educational or clinical story. I practice only as Washington allows for licensed physicians here. I can prescribe pharmaceuticals, though they don’t often help with sensory concerns, and I can order lab tests and consult/refer to more appropriate or higher level care when needed.
IN ALL CASES: I stick to tried and true methods: Proper diagnoses, Occupational Therapy, Speech-language assessment and treatment, ADHD assessment and treatment, behavior therapy for a adults and children with autism, parenting programs; psychological counseling for adults and children with anxiety and emotional issues concurrent with sensory overload. We attempt to identify triggers, request accommodations when needed, assemble a sensory diet (which has nothing to do with food), educate ourselves on new and emerging therapies and clinical diagnostics, and even mindfulness and exercise can be part of the mix. Less commonly, optometry and audiology may be pursued.
The State of Washington has recently limited those who can diagnose autism and autism spectrum disorder IN CHILDREN to:
Question 5. Who can diagnose autism?
Answer: By law in Washington State, only the following professionals are qualified to give a diagnosis:
- Board eligible neurologists.
- Board eligible psychiatrists.
- Licensed psychologists.
- Board certified developmental and behavioral pediatricians.
Below please enjoy the links posted for other resources and educational materials from the STAR Institute for Sensory Processing Disorder, The STAR Institute was formed in 2016 from two merged organizations SPD Foundation and STAR Center. STAR Institute for SPD provides premier treatment, education, and research for children, adolescents, and adults with SPD.
Subtypes of Sensory Processing Disorder
Selected Bibliography for Adults Living with SPD