There are a number of considerations when searching for services available to help people with autism. Navigate the menu on the left to read more.
[accordion] [section name=”Choosing Diagnostic Services”]
What should I consider when choosing diagnostic/evaluation services?
There are a number of considerations when making this decision:
How urgent is the evaluation? Is your child very young and are you concerned about a new diagnosis of autism? Do not wait to begin therapy or start securing services you may need until after the diagnostic evaluation, especially if you believe you may be placed on a waiting list. Contact your local school district, early intervention services, community mental health agency and a speech/language pathologist. For some therapies, a diagnosis of autism is required before beginning the program. However, services like occupational and speech therapy can begin immediately in most organizations. Early intervention or school evaluations are conducted independently of the medical evaluation, so there is no need to wait.
If you need a specialist urgently, contact your primary care provider or pediatrician and inquire about seeing a psychiatrist (especially if behavior is unsafe to the individual or others). Typically, medical facilities will make appointments for urgent matters.
2. Components of the Evaluation:
Conducted by licensed physicians, psychologists, psychiatrists, and/or neurologists. Perhaps more important than the type of specialists you see, is the training, experience, and documentation of credentials that make that individual competent to diagnose autism. Autism is a complex disorder which mirrors many other developmental and psychiatric disorders. Diagnosticians should be highly competent in recognizing the wide range of normal and atypical development, as well as being trained and experiences with multiple, differential diagnoses which might better explain behavior, communication, and social deficits than autism. To assure these recommendations are met, consider a multidisciplinary evaluation.
Inquire about the college/university the clinician attended. Quality university programs are accredited by specific college boards which apply rigorous standards for curriculum and training experiences.
Multiple specialists: We highly recommend evaluation by a multidisciplinary team of specialists, with expertise across at least 2-3 areas to assure an accurate and reliable diagnosis.
Thorough review of history through parent/caregiver report and previous evaluations:
- 1. Medical
- 2. Developmental
- 3. Educational
- 4. Therapy
- 5. Family history
Parent/Caregiver and Teacher/Child care provider (when applicable):
To review history and present concerns.
Standardized assessment tools: A good evaluation should include extensive history review, parent/caregiver/teacher interviews/input, direct observation, standardized assessments (when possible), and use of autism specific protocols/tools.
Beware of professionals who make a diagnosis simply by observing your child for a short period of time and who do not use diagnostic tests/tools.
Make sure you come prepared with questions for the clinician. Prepare these ahead of time. Some questions you might consider asking:
- 1. What are the signs or behaviors you observed that led you to the diagnosis?
- 2. How did my child perform on the tests that were used?
- 3. What severity or functioning level do you feel my child is at? Can you place him/her in a PDD, Autism, or Aspergers diagnosis?
- 4. What other evaluations may be needed, to confirm the diagnosis or to assist in treatment planning?
- 5. What therapies will be most effective?
- 6. What educational services and supports will be needed?
- 7. Am I eligible for services and/or supports through Community Mental Health?
- 8. Where can I get information about low cost therapies? Are there other sources of funding which are available for therapy costs?
- 9. Are there on-line sources which might be helpful to understand the disorder or help me locate services?
- 10. Where can I go to get legal advice or learn about my rights as a parent?
[section name=”Choosing a Therapy Program”]
What should I Consider when Choosing a Therapy Program?
There are a number of considerations when making this decision:
High staff turnover may suggest that your therapist will not be accessible or employed in the organization for a long period of time. If you are looking for a therapist who will follow your child for several months, or years, this may not be the best place.
Make sure the therapist you are seeing is board certified and/or licensed. The following credentials should be identified for you:
Behavioral Therapists: For applied behavior analysis (ABA) therapy, only a board certified behavior analyst (BCBA) is qualified to provide this therapy.
Speech Language Pathologists: Look for “CCC-SLP”. This indicates that the therapist holds a certificate of clinical competence from The American Speech/Language/Hearing Association.
Occupational Therapists: Look for “OTR”, which indicates that the therapist is board certified by the National Board of Certified Occupational Therapists (NCBOT).
Physical Therapist: Physical therapists should be certified by the American Physical Therapy Association (APTA).
Nutritionist: Certified by the Clinical Nutrition Certification Board (CNCB).
Inquire about the college/university your therapist attended. Quality university programs are accredited by specific college boards which apply rigorous standards for curriculum and training experiences.
You should consider a clinician’s experiences. Do not be afraid to ask about your therapist’s qualifications. Just because he/she works with children does not mean he/she is able to effectively treat a child with autism spectrum disorder.
Consider that sometimes, even a very good therapist is just not a “good fit” for a particular child. Give it time (but no longer than 2-3 months) before you rush to judge whether a therapist is “good” or not. This person is a stranger to your child and you are asking him/her to spend many hours interacting with a new person. A comfortable, secure relationship with the therapist is important in any therapy, and sometimes takes time.
Beware of therapists who do not willingly share information about the treatment sessions and your child’s performance. Ideally, you should have opportunity to observe any session you wish. However, in some cases, a child’s behavior with the caregiver in the room may interfere with the treatment session. In these cases, ask to have sessions videotaped, or when possible, observe through a one-way mirror.
Ask your therapist to provide you with data, showing how your child responded to treatment tasks. This should be provided at least once per month. You should also consider scheduling brief meetings once per month to obtain regular reports on how therapy is working for the child. If your child is not progressing after 3 months of any therapy, you and the therapist should consider:
- Increasing the frequency/intensity of therapy
- Adjusting the objectives/goals
- Introducing new/different activities
- Determining whether or not “maintaining” factors are present; has sleep, diet, family stress, a change in routine/schedule impacted your child’s behavior or performance?
- Transitioning to another therapist
Therapy Methods Used:
Effective methods are used with appropriate intensity and fidelity
Effective methods are used to accomplish meaningful outcomes
Individualized program goals are addressed using effective methods
Addresses core deficits of ASD:
- Restricted, repetitive behaviors
- Does program address functional academic skills, if appropriate?
- Does program address self-advocacy skills and independence for activities of daily living for adults with ASD?
- Incorporates functional assessment and positive behavior support to address problem behaviors
- What are the potential risks? Could the approach harm the child?
- What proof exists to support the efficacy of the method?
- How will the method be evaluated? How will you know it is working? There is on-going assessment and documentation of progress.
- What are the anticipated outcomes of the option?
- Does the program provide sufficient intensity for progress?
- Promotes generalization and maintenance in natural contexts.
- How many children have gone on to placement in a regular school and how have they performed?
Does the intervention program match the family vision and the developmental level and learning style of the individual?
Family participation is considered, parent stress is monitored; what is the impact on the caregiver and siblings?
What is the cost, time commitment, and location of the program?
Quality of Life Considerations:
- What is important to the person?
- Is the program or service facilitating that personal outcome?
- Recreational programs do not always lead to an observable change in behavior or function. However, consider other outcomes when deciding on whether or not a non-traditional program may be beneficial;
- Do you see a positive change in attitude, behavior, affect, compliance, with the service?
- Do other family members benefit from the program, either directly, or indirectly, when the affected individual is enjoying themselves, for example.
- Does the service provide some balance in the individual’s life (e.g., recreation to break from clinical demands?)
Other considerations when choosing services for your family member with ASD:
- Active Ingredients of Effective Programs (NRC, 2001): Birth – 8 years, but some apply to older individuals:
Entry into intervention programs as soon as ASD is suspected.
- Active engagement in intensive instruction programming for a minimum of 5 hours per day, 5 days a week. Instruction is used broadly to refer to the structure that supports learning and can occur in any environment-the home, school, or community settings. Most important is active engagement with important communication partners, in natural settings.
- Repeated, planned teaching opportunities.
- Inclusion of a family component, including parent training.
- Low student : teacher ratios
- Mechanisms for ongoing assessment and program evaluation with corresponding adjustments in programming: Lack of progress over 3-month period is indicator that changes in some aspect of programming is needed, such as intensity, lowering student/teacher ratio, modifying curricula or strategies, or targeting different objectives.
- Components of an effective educational program to support the school age child with ASD: (Your child may need some or all of the following. These may be included in the child’s educational plan, but in many cases, parents may need to seek additional therapies through private clinics or health systems to supplement the school program).
Universal Supports – Universal Supports Assessment and Planning Tool (USAPT)
The concept behind Universal Supports is derived from the extensive research in the area of school-wide positive behavior support. Universal Supports are system-wide supports and strategies to prevent a majority of problem behaviors in general education settings. Applied to students with ASD, Universal Supports involve the implementation of classroom or building-level evidence-based supports and strategies. These strategies are considered critical for the vast majority of students with ASD, and have been identified as highly effective practices in teaching and supporting students with ASD in integrated environments. In whole, these supports and strategies provide students with ASD a solid foundation for learning and can be individualized to meet the unique needs of each student.
The USAPT is designed to measure two main areas of support within school buildings / programs. The first main area is foundational supports. Foundational supports, processes and relationships are necessary to have established before implementing specific educational supports for students. It is essential for schools to have effective team processes, guiding principles, and a commitment to working with families established before attempting to improve other support systems. If these three systems are not in place, then even the best efforts to improve other areas will yield limited success. The second area of support consists of specific strategies to help students with ASD function independently and develop appropriate social behavior.
Functional Behavioral Assessment (FBA) and Plan:
Functional behavioral assessment is generally considered to be a problem-solving process for addressing student problem behavior. It relies on a variety of techniques and strategies to identify the purposes of specific behavior and to help education teams select interventions to directly address the problem behavior. Functional behavioral assessment should be integrated, as appropriate, throughout the process of developing, reviewing, and, if necessary, revising a student’s educational plan. The focus when conducting a functional behavioral assessment is on identifying significant, pupil-specific social, affective, cognitive, and/or environmental factors associated with the occurrence (and non-occurrence) of specific behaviors. This broader perspective offers a better understanding of the function or purpose behind student behavior. Behavioral intervention plans based on an understanding of “why” a student misbehaves are extremely useful in addressing a wide range of problem behaviors.
- Applied Behavioral Analysis for behavior management and skill deficit
- Speech Language Therapy
- Occupational Therapy and Sensory Integration Therapy
- Cognitive Behavioral Therapies
- Social Skills Groups
- Tutor Services
Parent should understand that they have rights in the special education planning process and that their input should be considered during all stages of planning. You should refer to the Wrights Law website for more information about the special education process and the role parents should play.