How has DSM-5 affected an autism diagnosis?

Many parents and individuals with autism were afraid that DSM-5 might bring major changes to their diagnosis in the sense of services and insurance coverage. The DSM -5 main purpose was to help categorize disorders into “classes” with the intent of grouping similar disorders to help clinicians and researchers when diagnosing individuals with autism.

DMS-5

What is the DSM-5?

The American Psychiatric Association publishes the Diagnostic and Statistical Manual of Mental Disorders (DSM) to guide healthcare professionals in diagnosing mental health conditions. The manual’s fifth edition – DSM-5 – took effect in May 2013. In the medical profession, it is commonly referred to as ‘the bible of psychiatry.’ The DSM-5 lists the signs and symptoms of autism spectrum disorder and states how many of these must be present to confirm a diagnosis of autism spectrum disorder. Psychiatrists and clinical psychologists alike seek to reference patients against a checklist of behaviors provided in the DSM-5.

The importance of being diagnosed with autism

An official (clinical) diagnosis is deemed necessary for a number of reasons, some of which include:

  • Better access to disabled services by registering with the Department of Work and Pensions (DWP) as disabled.
  • Improved conditions in an educational setting for example the Individual Education Plans (IEPs).
  • Improved employment conditions as diagnosis leads to support/protection under The Autism Act 2009.
  • Improved sense of ‘self’ as the individual seeks to understand his/herself better.

Years later, it’s clear the DSM-5 did not cut services for people already diagnosed with an autism spectrum disorder. A growing body of evidence, however, shows that its criteria do exclude more people with milder traits, girls, and older individuals than the DSM-IV did.

Autism Spectrum Disorder

How does the DSM-5 change the way autism is diagnosed?

The first change with the new edition of the DSM is to combine the formerly separate diagnoses of autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not-otherwise-specified into one group with the name of autism spectrum disorder.
The second change is the combining of the three domains that appeared in DSM-IV

  • Qualitative impairments in social interaction
  • Qualitative impairments in communication
  • Restricted repetitive stereotyped patterns of behavior

The third change is a change in the criteria within the social/communication domain that were merged and streamlined to clarify diagnostic requirements.

Clinicans

What developed based on the change to DSM-5?

The two categories symptoms that evolved were

  • Persistent deficits in social communication/interaction and
  • Restricted, repetitive patterns of behavior

The following rationale was provided:

  1. Deficits in communication and social behaviors are inseparable
  2. Delays in language are neither unique to autism (i.e., they appear in other disorders) nor are they universal (i.e., not all individuals with autism have them)
  3. The changes improved the specificity of the diagnosis while not compromising the sensitivity
  4. Increased sensitivity across severity levels of autism
  5. Secondary analyses of data sets support the combination of categories.

Additional assessment for:

  • Any known genetic causes of autism (e.g. fragile X syndrome, Rett syndrome)
  • Language level
  • Intellectual disability and
  • The presence of autism-associated medical conditions (e.g. seizures, anxiety, gastrointestinal disorders, disrupted sleep)

Creation of a new diagnosis of social communication disorder, for disabilities in social communication without repetitive, restricted behaviors.

Specific changes in diagnostic criteria for autism spectrum disorder (ASD):

  • Eliminates subtypes of ASD including Asperger’s disorder and Pervasive Development Disorder (PDD-NOS) from the scientific lexicon
  • Symptoms reduced to two domains: social interaction/communication and restricted/repetitive behaviors
  • Eliminates language delay as a diagnostic symptom
  • Addition of hyper- or hypo-reactivity to sensory stimuli to list of symptoms of restricted/repetitive behavior
  • Onset of symptoms in early childhood (rather than before age 3 years)

DSM-5 guidelines for persistent deficits in social communication/interaction

Difficulties in social communication

Signs in this area include:

  • rarely using language to communicate with other people
  • not speaking at all
  • rarely responds when spoken to
  • not sharing interests or achievements with parents
  • rarely using or understanding gestures like pointing or waving
  • using only limited facial expressions to communicate
  • not showing an interest in friends or having difficulties making friends
  • rarely engaging in imaginative play

DMS-5 guidelines for restricted, repetitive patterns of behavior

Restricted, repetitive, and sensory behavior or interests

Signs in this area include:

  • lining up toys in a particular way over and over again
  • frequently flicking switches or spinning objects
  • perform repetitive behaviors like hand-flapping, rocking, jumping, or twirling
  • speaking in a repetitive way
  • having very narrow or intense interests
  • needing things to always happen in the same way
  • having trouble with changes to their schedule, or changing from one activity to another
  • showing signs of sensory sensitivities like becoming distressed by everyday sounds like hand dryers, not liking the feel of clothes labels, or licking or sniffing objects

The diagnosis indicates support levels for each area. This means that children might have different support levels for their social communication skills compared to their restricted, repetitive, and/or sensory behaviors. Or they might have the same support level for both.

Remember, non-clinical can assess a person, but a medical professional can diagnose a person.

Levels of support can change over time. This happens as children grow and go through transitions. These transitions include moving from child care to primary school to secondary school, or changes in family life like the birth of siblings.

Minor revisions with DSM-5-TR

The DSM-5-TR version was updated for clarity on the wording of the diagnosis. The first change, it now reads “associated with a neurodevelopmental, mental, or behavioral problem.” The second change is to broaden the idea of specifiers.

The diagnosis may be suspected by developmental screens done at 9 months, 18 months, and 24 months of age. The key is to find out as soon as possible if a child is on the spectrum. That way, you can line up resources to help your child reach their full potential. The sooner that starts, the better. Each child is uniquely different with their own personality and interests. Let Leafwing help you start the support that your child deserves.

Let Leafwing professionals educate you and your child to develop the language skills that will help guide your child to reach their full potential.

Frequently asked questions about ABA therapy

What is ABA Therapy used for?

ABA-based therapy can be used in a multitude of areas. Currently, these interventions are used primarily with individuals living with ASD; however, their applications can be used with individuals living with pervasive developmental disorders as well as other disorders. For ASD, it can be used in effectively teaching specific skills that may not be in a child’s repertoire of skills to help him/her function better in their environment whether that be at home, school, or out in the community.  In conjunction with skill acquisition programs, ABA-based interventions can also be used in addressing behavioral excesses (e.g., tantrum behaviors, aggressive behaviors, self-injurious behaviors). Lastly, it can also be utilized in parent/caregiver training.

In skill acquisition programs, a child’s repertoire of skills is assessed in the beginning phase of the services in key adaptive areas such as communication/language, self-help, social skills, and motor skills as well.  Once skills to be taught are identified, a goal for each skill is developed and then addressed/taught by using ABA-based techniques to teach those important skills. Ultimately, an ABA-based therapy will facilitate a degree of maintenance (i.e., the child can still perform the learned behaviors in the absence of training/intervention over time) and generalization (i.e., the learned behaviors are observed to occur in situations different from the instructional setting).  These two concepts are very important in any ABA-based intervention.

In behavior management, the challenging behaviors are assessed for their function in the beginning phase of the services. In this phase, the “why does this behavior happen in the first place?” is determined. Once known, an ABA-based therapy will be developed to not just decrease the occurrence of the behavior being addressed, but also teach the child a functionally-equivalent behavior that is socially-appropriate.  For example, if a child resorts to tantrum behaviors when she is told she cannot have a specific item, she may be taught to accept an alternative or find an alternative for herself. Of course, we can only do this up to a certain point—the offering of alternatives.  There comes a point when a ‘no’ means ‘no’ so the tantrum behavior will be left to run its course (i.e., to continue until it ceases).  This is never easy and will take some time for parents/caregivers to get used to, but research has shown that over time and consistent application of an ABA-based behavior management program, the challenging behavior will get better.

In parent training, individuals that provide care for a child may receive customized “curriculum” that best fit their situation.  A typical area covered in parent training is teaching responsible adults pertinent ABA-based concepts to help adults understand the rationale behind interventions that are being used in their child’s ABA-based services.  Another area covered in parent training is teaching adults specific skill acquisition programs and/or behavior management programs that they will implement during family time.  Other areas covered in parent training may be data collection, how to facilitate maintenance, how to facilitate generalization of learned skills to name a few.

There is no “one format” that will fit all children and their families’ needs. The ABA professionals you’re currently working with, with your participation,  will develop an ABA-based treatment package that will best fit your child’s and your family’s needs. For more information regarding this topic, we encourage you to speak with your BCBA or reach out to us at [email protected].

Who Can Benefit From ABA Therapy?

There is a common misconception that the principles of ABA are specific to Autism. This is not the case. The principles and methods of ABA are scientifically backed and can be applied to any individual. With that said, the U.S. Surgeon General and the American Psychological Association consider ABA to be an evidence based practice. Forty years of extensive literature have documented ABA therapy as an effective and successful practice to reduce problem behavior and increase skills for individuals with intellectual disabilities and Autism Spectrum Disorders (ASD). Children, teenagers, and adults with ASD can benefit from ABA therapy. Especially when started early, ABA therapy can benefit individuals by targeting challenging behaviors, attention skills, play skills, communication, motor, social, and other skills. Individuals with other developmental challenges such as ADHD or intellectual disability can benefit from ABA therapy as well. While early intervention has been demonstrated to lead to more significant treatment outcomes, there is no specific age at which ABA therapy ceases to be helpful.

Additionally, parents and caregivers of individuals living with ASD can also benefit from the principles of ABA. Depending on the needs of your loved one, the use of specified ABA techniques in addition to 1:1 services, may help produce more desirable treatment outcomes. The term “caregiver training” is common in ABA services and refers to the individualized instruction that a BCBA or ABA Supervisor provides to parents and caregivers. This typically involves a combination of individualized ABA techniques and methods parents and caregivers can use outside of 1:1 sessions to facilitate ongoing progress in specified areas.

ABA therapy can help people living with ASD, intellectual disability, and other developmental challenges achieve their goals and live higher quality lives.

What does ABA Therapy look like?

Agencies that provide ABA-based services in the home-setting are more likely to implement ABA services similarly than doing the same exact protocols or procedures. Regardless, an ABA agency under the guidance of a Board-Certified Behavior Analyst follows the same research-based theories to guide treatment that all other acceptable ABA agencies use.

ABA-based services start with a functional behavior assessment (FBA). In a nutshell, a FBA assesses why the behaviors may be happening in the first place. From there, the FBA will also determine the best way to address the difficulties using tactics that have been proven effective over time with a focus on behavioral replacement versus simple elimination of a problem behavior. The FBA will also have recommendations for other relevant skills/behaviors to be taught and parent skills that can be taught in a parent training format to name a few. From there, the intensity of the ABA-based services is determined, again, based on the clinical needs of your child. The completed FBA is then submitted to the funding source for approval.

One-on-one sessions between a behavior technician and your child will start once services are approved. The duration per session and the frequency of these sessions per week/month will all depend on how many hours your child’s ABA services have been approved for—usually, this will be the number recommended in the FBA. The sessions are used to teach identified skills/behaviors via effective teaching procedures. Another aspect of ABA-based services in the home-setting is parent training. Parent training can take many forms depending on what goals have been established during the FBA process. The number of hours dedicated for parent training is also variable and solely depends on the clinical need for it. If a 1:1 session is between a behavior technician and your child, a parent training session or appointment is between you and the case supervisor and with and without your child present, depending on the parent goal(s) identified. Parent training service’s goal is for you to be able to have ample skills/knowledge in order for you to become more effective in addressing behavioral difficulties as they occur outside of scheduled ABA sessions. Depending on the goals established, you may be required to participate in your child’s 1:1 sessions. These participations are a good way for you to practice what you have learned from the case supervisor while at the same time, having the behavior technician available to you to give you feedback as you practice on those new skills.

As mentioned in the beginning, no two ABA agencies will do the same exact thing when it comes to providing ABA services; however, good agencies will always base their practice on the same empirically-proven procedures.

How do I start ABA Therapy?

In most cases, the first item required to start ABA therapy is the individual’s autism spectrum disorder (ASD) diagnosis report. This is typically conducted by a doctor such as a psychiatrist, psychologist, or a developmental pediatrician. Most ABA therapy agencies and insurance companies will ask for a copy of this diagnosis report during the intake process as it is required to request an ABA assessment authorization from the individual’s medical insurance provider.

The second item required to start ABA therapy is a funding source. In the United States, and in cases where Medi-Cal or Medicare insurances are involved, there is a legal requirement for ABA services to be covered when there is a medical necessity (ASD diagnosis). Medi-Cal and Medicare cover all medically necessary behavioral health treatment services for beneficiaries. This typically includes children diagnosed with ASD. Since Applied Behavior Analysis is an evidence based and effective treatment for individuals with ASD, it is considered a covered treatment when medically necessary. In many cases, private insurance will also cover ABA services when medically necessary, however in these cases, it is best to speak directly with your medical insurance provider to determine the specifics of the coverage and to ensure that ABA is in fact, a covered benefit. Additionally, some families opt to pay for ABA services out-of-pocket.

The next step to starting ABA therapy is to contact an ABA provider whom you are interested in working with. Depending on your geographic location, ABA agencies exist in many cities across the United States. Your insurance carrier, local support groups, and even a thorough online search can help you find reputable and properly credentialed ABA agencies near you. Our organization, LeafWing Center, is based in southern California and is recognized for aiding people with ASD achieve their goals with the research based on applied behavior analysis.

Once you have identified the ABA provider with whom you wish to work, they should help you facilitate the next steps. These will include facilitating paperwork and authorizations with your funding source. Once the assessment process begins, a BCBA (Board Certified Behavior Analyst) or qualified Program Supervisor should get in contact with you to arrange times in which interviews with parents/caregivers and observations of your loved one can be conducted. This will help in the process of gathering important clinical information so that with your collaboration, the most effective treatment plans and goals can be established for your loved one. This process is referred to as the Functional Behavior Assessment (FBA) and is elaborated on in different blog posts on our website. With regard as to what can be expected once ABA therapy begins, please read our blog post titled: When You Start an ABA program, What Should You Reasonably Expect from Your Service Provider?

How Does Senate Bill 946 Affect Individuals with Autism in California?

Senate Bill 946, passed by the State Assembly and the State Senate on September 9th, 2011 and signed by then Governor Brown and filed with the Secretary of State on October 9th, 2011 is a monumental step for individuals with Autism and Pervasive Developmental Disorder (PDD) in California. The new law took effect on July 1st, 2012.

Previous to this bill signing, individuals with autism could get necessary services in one of three ways. First, families or caregivers could pay out-of-pocket. Only a small segment of the population could afford this as estimated costs for monthly services ranged from $3,000 to $12,000. The second way to get services was to request them from your local school district. This has proven to be very challenging as the school districts have been unfamiliar with the unique service type and more recently are financially challenged. Last was the option of regional centers. There are 21 in the state of California at present and each one has taken a slightly different approach to providing services for Individuals with Autism and Pervasive Developmental Disorder. In addition, the budget crisis in California in the early 2010’s has greatly affected most regional center’s abilities to provide services. Thus, using a regional center then for services for an individual with Autism or PDD depending on where one lived and the policies of that regional center, could also prove challenging.

As a result of SB 946 over the last few years, individuals with Pervasive Developmental Disorders or Autism are entitled to use their medical insurance to obtain services. Specifically, as of July 1, 2012 individuals in the state of California can now use their medical insurance to obtain services Pervasive Developmental Disorders or Autism. This applies to the following medical service providers: Every health care service plan contract that provides hospital, medical, or surgical coverage. It appears that SB 946 does not apply to a medical insurance plan that does not provide behavioral health or mental health services, a health care service plan in the Medi-Cal program, a health care service plan in the Healthy Families Program, or health care benefit plan or contract entered into with the Board of Administration of the Public Employees’ Retirement System.

It is important to note that SB 946 specifically states that there is no intention of the bill to alter the responsibilities that have typically fallen under an Individual Educational Plan (IEP) under the Individuals with Disabilities Education Act (IDEA and its amendments and reauthorizations) or in and Individual Program Plan (IPP) under Title 17. We interpret this to mean that SB 946 does not mean that school systems will no longer have to provide services or will have to alter the services they provide to individuals with Pervasive Developmental Disorders or Autism because the bill now requires that medical insurance will now also cover services. In addition, we feel that the same conclusion can be reached that SB 946 will not eliminate, reduce, or alter regional center’s responsibilities to provide services to Pervasive Developmental Disorders or Autism under Title 17.

What treatments are covered? The following is what SB 946 is referring to when it is talking about services. Specifically, “Behavioral Health Treatment” means professional services and treatment programs, including Applied Behavior Analysis and evidence-based behavior intervention programs. Other than Applied Behavior Analysis, no specific mention of another treatment approach is made.

What is required of the treatment programs? The treatment programs must include all of the following criteria to be eligible for coverage. First, the treatment has to be prescribed by a physician or licensed psychologist. Second, the treatment follows a treatment plan prescribed (developed by) a qualified Autism service provider and administered by a qualified Autism service provider, a qualified autism service professional supervised and employed by the qualified autism service provider, or a qualified autism service paraprofessional supervised and employed by a qualified autism service provider. Third, the plan developed by a qualified Autism service provider has measurable goals that are specified to a timeline and that are unique to the individual being treated. The treatment plan has to be reviewed no less that once every six months, modified when appropriate, and describes the individual with Autism’s impairments that will be treated; develops an intervention plan that specifies the service type (i.e., techniques and methodology), the number of hours required, the level of parent participation to achieve those goals, and the frequency of progress evaluation and progress reporting. Fourth, discontinues intensive intervention services when goals have been achieved or are no longer appropriate. Last, the treatment is not used as a means of or a reimbursement for a respite program, day care, or educational services and cannot be used as a means to reimburse a parent for participating in the program.

What is a qualified Autism service professional? SB 946 specifies the following criteria must be met to be considered a qualified Autism service professional. First, this person provides behavioral health treatment (e.g., treatment for individuals with Autism). Second, if they do not meet the criteria to be a qualified Autism provider, that the person is employed and supervised by a qualified autism service provider (e.g., an agency or clinic). Third, that individual provides treatment that follows a treatment plan developed and approved by the qualified autism service provider. Third, is a behavioral service provider approved as a vendor by a California regional center to provide services as BCBA-D, BCBA, BCaBA, a Behavior Management Assistant, a Behavior Management Consultant, or a Behavior Management Program as defined in Section 54342 of Title 17 of the California Code of Regulations. We interpret this to mean that one of the criteria to be considered a qualified Autism professional is to have met the vendor requirements of a California regional center. Fourth, that the individual has training and experience in providing services for pervasive developmental disorder or autism.

SB 946 also provided for an Autism Advisory Task Force. The purpose of the task force was to submit a report to the Governor and specified members of the Legislature by December 31, 2012. The report developed recommendations regarding behavioral health treatment that is medically necessary for the treatment of individuals with autism or pervasive developmental disorder.