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Autism Experts and What They Can and Can't Tell You | by heidi


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

Because it is so complex, you will almost certainly need to build an entire team of "autism experts" to help you and your child navigate the many challenges and opportunities you'll experience over time. You'll also have to make strategic personal decisions about what kinds of experts are most relevant and helpful in your particular situation.

Finally, you'll want 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

If you think of autism as a journey rather than an event, it's easy to see why different types of autism experts would be helpful at different points in time. For example, you'll only need access to an expert diagnostician 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 a 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 your 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 your child overcome sensory challenges but be unable to recommend any interventions relative to speech delays.

Because you and your child have such a wide range of needs that will change over time, you will need to turn to a wide range of experts. The bottom line, however, is that you are The Expert on your particular child, their needs, and their strengths.

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

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 you may start interacting with autism specialists before your child turns two, or not until they reach school age. Either way, you will probably interact with at least some of these specialists.


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 your 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 your child is diagnosed with autism at a very young age, chances are good that your 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 parents, 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 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 your child is over the age of 6 and no longer qualifies for early intervention.

Autism Experts for School-Aged Children

As you become more familiar with your child's needs and the available options, you'll discover a wide range of experts on everything from social skills to academics to special education. 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 you 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 your 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 your child's therapy will be of poor quality (many therapists with certifications are quite talented). But it does mean your child's therapist may know little about the different types of behavioral therapy, or which type of behavioral therapy would be best for your child, or how to access behavioral therapy through the school or your insurance plan.

And no matter how qualified your 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 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 required specialized training and expertise.

Special Education Teachers, Administrators, and Aides

As your child moves into the public school system you will 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 your 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, your 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 your child engage in after school activities.

Also remember that while the district may have your 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 services you want for your child. When that happens, you 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 your child with autism becomes a teen with autism you 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 you should become your 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 special needs.

These individuals can help you 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 you with much in the way of specific suggestions for housing or jobs.

Adult Services and Accommodations Experts

Once your 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 your adult child find, learn, and keep a job. They may or may not know which job is best for your child or how to help your child build skills to advance at their job—but they are critical for helping your 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 your child to process difficult situations or challenges.

Special Needs Housing Specialists

Special needs housing is a specialty in itself because funding can come from many sources and options are wide-ranging. Special needs housing experts must know how to determine if your 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 you sign your child up for low-income housing (even if you, their parent, are not low income). There are specific laws that apply to special needs housing in each state as well—some of which are complex and counter-intuitive.

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

Special Needs Law Experts

As you and your child get older, you will need to think about issues such as guardianship, health proxies, power of attorney, supplemental trusts, and other legal and financial issues.

Special needs lawyers (or ordinary family lawyers with special needs experience) can help you think through the best options for your child and family and draft appropriate legal documents.

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