Autism Experts and What They Can and Can't Tell You

No one can tell someone everything there is to know about autism. That's because autism is a complex neurological condition that requires intervention in many aspects of daily life, and every person with autism is unique.

Because it is so complex, there may be a need to build an entire team of "autism experts" to help navigate the many challenges and opportunities autistic children and their families experience over time. Strategic personal decisions about what kinds of experts are most relevant and helpful in one's particular situation also must be made.

Finally, it is important to consider the costs related to particular types of autism experts. Some can charge a great deal and are not covered by school districts or insurance.

Types of Autism Expertise

Thinking of autism as a journey rather than an event makes it easy to see why different types of autism experts would be helpful at different points in time. For example, access to an expert diagnostician is only necessary for a short period of time, after which you might need to connect with a range of therapists and educators.

Each of these individuals has special knowledge in their own area—but may know nothing about the broader needs of an autistic child and their family. For example:

• Diagnosticians may know a great deal about the literature surrounding autism symptoms, but have no idea which early intervention services are best suited to a particular autistic child's needs.
• Behavioral specialists may be able to teach a range of skills but have no idea how to teach academics to a child with autism.
• Occupational therapists may be able to help an autistic child overcome sensory challenges but be unable to recommend any interventions relative to speech delays.

Because autistic children and their families have such a wide range of needs that will change over time, they will need to turn to a wide range of experts.

The bottom line is that aside from the autistic children themselves, parents or guardians tend to know more about their particular child's needs and strengths.

The fact that another guardian swears by a particular therapist, therapy, school, or social skills program does not mean that it's the best choice for another autistic child (or for their family).

Autism Experts for Young Children

Most children with autism begin to show symptoms around 18 months of age. Those symptoms may be very obvious or quite subtle. That means that families may start interacting with autism specialists before a child turns two, or not until they reach school age. Either way, families of autistic children will probably interact with at least some of these specialists.

Diagnosticians

Developmental pediatricians and neurologists, child psychologists, speech and occupational therapists, and even school psychologists may be involved with the process of diagnosing autism. Most experts recommend a multi-disciplinary approach to diagnosis because many symptoms of autism overlap with other very different disorders.

While diagnosticians are great at determining whether or not a child is autistic, they are unlikely to offer much in the way of ongoing support or specific recommendations for where to find the types of therapy or educational resources you will need.

Early Intervention Experts

If a child is diagnosed with autism at a very young age, chances are good that a child will qualify for early intervention until the age of 6 (if they don't enter public school earlier).

Early intervention experts are specifically trained to work with very young children and their guardians, both in and outside of a school setting. Many come to the homes of children as young as 18 months old and may provide parent or guardian training.

Many early intervention experts are terrific with children on the autism spectrum but may have little to offer in the way of suggestions for next steps. For example, they may know little about what your school district can offer once a child is over the age of 6 and no longer qualifies for early intervention.

Autism Experts for School-Aged Children

As families become more familiar with their child's needs and the available options, a wide range of experts on everything from social skills to academics to special education await them. Each of these experts has their own area of specialty—and few will be able to provide you with much detail about anything else.

This can be especially frustrating when families discover that there are specialties even within one type of therapy. There is no way to get around this; the only solution is to keep asking questions, attending conferences, and doing the research.

Behavioral Therapists

Most schools and many insurance agencies offer behavioral therapy for children with autism. There are several "flavors" of behavioral therapy including Applied Behavior Analysis, Pivotal Response Therapy, and Verbal Behavioral Therapy. Each type of behaviorist works a little differently and has slightly different goals and hoped-for outcomes.

While a child's behavioral plan may be developed by a full-fledged behavioral therapist with an advanced degree, their actual day to day therapy will probably be provided by someone with a simple certification.

That doesn't mean the child's therapy will be of poor quality (many therapists with certifications are quite talented). But it does mean the child's therapist may know little about the different types of behavioral therapy, or which type of behavioral therapy would be best for a child, or how to access behavioral therapy through the school or your insurance plan.

And no matter how qualified a child's behaviorist is, they will probably have little information to offer about non-behavioral types of therapy.

Developmental Therapists

Developmental therapy is quite different from behavioral therapy; it focuses more on the child's intrinsic interests and emotional responses and less on "desired" behaviors.

There are many forms of developmental therapy, and each is quite different from the other; Floortime and Relationship Development Intervention (RDI) are two of the best known, but there are many others.

Developmental therapists usually have training in occupational therapy and/or speech therapy, which means they have a slightly broader perspective than some other autism experts. On the other hand, if they are focused on developmental therapy their knowledge of behavioral therapy or school programs will probably be limited.

Speech, Occupational, and Other Therapists

Most children with autism work with speech therapists and occupational therapists at some point. Many work with social skills therapists as well as physical therapists. Some parents or guardians decide to reach out to experts in sensory integration, arts therapy, hippotherapy (horseback riding therapy), recreational therapy, or other fields.

While all of these therapeutic approaches have elements in common, each is unique enough to require specialized training and expertise.

Special Education Teachers, Administrators, and Aides

As an autistic child moves into the public school system they may almost certainly be working with teachers, administrators, and school-based therapists to create an individualized educational plan (IEP). This is a legal document that outlines services and accommodations a child will receive.

You'll also be working on a day-to-day basis with special education teachers, special education administrators, and (in many cases) paraprofessionals such as 1-to-1 aides.

It's important to know that few of these individuals have experience or knowledge outside their specific jobs. Thus, a child's teacher may have a thousand great ideas for helping them to engage with their classmates, but no idea at all about how to help the child engage in after school activities.

Also remember that while the district may have a child's best interests at heart, they are also working with limited resources and a myriad of educational laws that may get in the way of providing the desired services for a child. This does not mean family members of autistic children should accept ableist exclusion at all. When hiccups happen, families may decide to reach out to yet more experts in fields such as legal advocacy or out-of-district testing and evaluation.

Autism Experts for Teens and Adults

As a child with autism becomes a teen with autism families will start planning their "transition" to adulthood (which occurs at age 22).

Transition is a somewhat complex process that should, ideally, involve planning (as appropriate) for secondary education, job training (or other more sheltered daily activity), housing, life skills, and financial independence. It also includes the very important question of whether or not a parent or familial caregiver should become an adult child's legal guardian.

Transition Experts

Not surprisingly, there are now school district employees who focus almost entirely on the process of developing transition plans for students with disabilities.

These individuals can help families identify the appropriate state agencies that will provide adult services, and they may even be able to help with applications to Social Security for SSDI and Medicaid (if appropriate). They will not, however, be able to provide families with much in the way of specific suggestions for housing or jobs.

Adult Services and Accommodations Experts

Once a child turns 22, they can no longer receive school services. If they are in college, they will be working with accommodations experts who can help them with extra services, supports, and therapies as needed.

If they are enrolled in a day program or living in a group situation they will be supported by adult services professionals who may be therapists, administrators, coaches, or even drivers who provide transportation.

All of these individuals have very specific roles and may know little about options, funding, or other details—though they may provide wonderful services within their particular area of expertise.

Job Coaches

Usually associated with state agencies or service providers funded through the state, job coaches literally help an adult child find, learn, and keep a job. They may or may not know which job is best for a child or how to help a child build skills to advance at their job—but they are critical for helping the child succeed in the workplace.

Cognitive Therapists

While young children with autism (especially with more severe forms of autism) may not be able to benefit from cognitive (talk) therapy, many adults on the spectrum find it very helpful.

Cognitive therapists may be social workers, psychologists, or psychiatrists; they may or may not be able to prescribe helpful medications; and they may or may not be able to help your child to navigate specific situations. They can, however, help a child to process difficult situations or challenges.

Disability Housing Specialists

Disability housing is a specialty in itself because funding can come from many sources and options are wide-ranging. Disability housing experts must know how to determine if a child qualifies for funding, where and how to access funds, and whether the funding can be used for group housing, independent or shared housing, or other options.

They may also be able to help families sign their child up for low-income housing (even if their parent or guardian is not low income). There are specific laws that apply to disability housing in each state as well—some of which are complex and counter-intuitive.

It is unlikely, however, that a disability housing expert will be able to recommend a specific group home or tell families whether a particular apartment will qualify for funding.

Special Needs or Disability Law Experts

As families and children with autism get older, they will need to think about issues such as guardianship, health proxies, power of attorney, supplemental trusts, and other legal and financial issues.

Special needs or disability lawyers (or ordinary family lawyers with disability law experience) can help families think through the best options for an autistic child and their family and draft appropriate legal documents.

Special needs or disability lawyers, however, can't help families decide whether or not to maintain guardianship over an adult child, nor can they help families to fund a special needs trust.

A Word From Verywell

There is no such thing as an "autism expert" who can support and guide families and their autistic child throughout childhood and into the adult years. That means aside from the autistic child themselves, families are the ultimate experts—and it will be up to them to find, select, guide, and learn from each expert over time. The process can be grueling, but the end result—a child who is capable of learning and living to their potential—is more than worth the effort.