Schools and service agencies that only know autism myths deny families and children needed services.  During this time of year, I attend so many Individualized Education Placement meetings, and also eligibility for services meetings!  And I see these same issues again and again!  Too many professionals are unaware of what autism is and how it presents differently in every child.

As the saying goes:  “If you know one child with autism, you know one child with autism.”  Professionals need to remember that.

So you can have a daughter with an autism diagnosis; you can have a verbal child with an autism diagnosis; you can have a highly gifted, intellectual child who loves learning who has an autism diagnosis.  Being female, verbal, smart, making eye contact, having friends, being extroverted and social – all of these things do not preclude an autism diagnosis.

The criteria for autism are simple:  an impairment in social communication and interaction; repetitive behaviors; symptoms appear before age 3  – but may not be problematic until older; and no other diagnosis accounts for these symptoms.  Simple!  So why can’t more professionals get this????

Social/communicative impairments can include a child who is using vocabulary four and five years beyond their age level – these kids have very marked impairments in school and making friends!  And many highly verbal children on the autism spectrum can explain their interest in steam engines for hours, but not tell you they are nigh fainting with hunger.  Again, this is an impairment, and in early intervention, it is still a delay that qualifies for services.  Social/communicative impairments can include very social children with many friends, yet these children become incapacitated when required to change activities or to do a new activity.  Often these children also have a limited ability to identify feelings and needs, and so collapse instead.  And I am also seeing happy, content, nonverbal children being denied autism diagnoses, because the clinician says happy children can’t be on the autism spectrum.  But extreme delays in communication are one hallmark of autism.

Repetitive behaviors are not just the stereotyped kid rocking in a corner.  The child who only recites Dr. Who television show dialogue is engaging in repetitive behavior.  The child who refuses to do anything but play video games is engaging in repetitive behavior.   The child who is toe-walking is engaging in repetitive behavior.  Children who struggle with transitions are engaging in repetitive behavior.  The child who picks lint off the carpet all day is engaging in repetitive behavior.  All of those behaviors qualify as one part of an autism diagnosis.

So parents often have to educate professionals while seeking services.  Yes, this is annoying.  But the more you learn about autism diagnoses, the more you can advocate for your child.  Learn about the many ways impairments impact children on the spectrum, and you can then more effectively get the services you need.  Yup hard work.  But it is worth it for your child!

WHOLE Families can help!  We regularly meet with early intervention and school services to ensure that children who need autism services are getting them!  We also do multiple professional workshops each year to teach others how to correctly identify and meet the needs of families impacted by autism.  Need help?  Call us!  Know an agency or school that could use some training?  Call us again.  Our job is to help all families dealing with autism get needed services and family support.  Let us know, and we will gladly help with your child’s needs.

Scotti and I are big fans of early intervention, and both of us love our many families in West Virginia’s early intervention program, Birth to Three.  We also work extensively with families who are moving out of Birth to Three, as their children are turning three-years-old, and no longer eligible for early intervention services.  When early intervention children turn three, they either transition to new programs, or they lose all services.

And that is why diagnosis matters so much in early intervention.  As children turn three, and age out of early intervention services, they are only eligible for special education services if they meet certain state and federal requirements for school special education.  And those school special ed programs are only available to students who meet the guidelines put into the Individuals with Disabilities Education Act (the IDEA).  If your child does not have the correct, federally recognized, diagnosis, then your child could lose special education services at the age of three!

So think about that!  For families who are dealing with little kiddos with special needs, the transition to special ed. seems pretty remote.  After all, tantrums, speech, feeding and sleep issues, toilet issues – all of those realities of special needs parenting take over a child’s early years.  So parents in early intervention are not worrying about special education down the road.

But you need to!

If early intervention specialists diagnose your child with “sensory processing disorder,” a common non-federally and non-medically recognized diagnosis, then at age three your child will not only age out of early intervention, but also lose any hope of special education placement, and any hope of insurance reimbursement for future services! Since sensory processing disorder language often hides the wide range of abilities and needs that are common to children on the autism spectrum,  that unrecognized diagnosis can later cost families thousands of dollars in therapy costs, as well as confining a child to limited accommodations when the child reaches school.  Not having the right diagnosis can be really damaging to families with special needs children.

So I know it is tough, but I encourage families in early intervention, whether you work with WHOLE Families or not! – to actively demand good psych evaluations for children who get labels such as “sensory processing disorder,” or non-specified “developmental delays”(not to be confused with Global Developmental Delay, which is a recognized diagnosis), or with “speech and language delays.”  All of those non-recognized diagnoses can limit your future services in very significant ways.

So what should families do??

Families can request a thorough evaluation from qualified professionals who have recognized expertise evaluating children with non-specified delays in speech, motor skills, typical development, and social interaction skills at the early intervention age.  In West Virginia, the qualified professionals who can do these evaluations are medical doctors and licensed psychologists.  West Virginia Birth to Three has several licensed psychologists who can evaluate a child for autism spectrum disorders, and you as a parent can demand that evaluation be done.  Be sure to get a copy of the evaluation, and keep a copy for when your child is old enough to transition into special education at age three.

And what if you have a child who has left Birth to Three and early intervention, is not receiving special education services, and you as a parent feel your child needs special education or recognized therapy?  Get your child’s records from Birth to Three, which you are legally entitled to have, and then send a written request to your local school district, explaining your concerns, and asking for an evaluation for your child.  Be sure this request is in writing, and the best process is to take the letter to your local school, ask the secretary to copy it and sign it that it has been received on the copy, and to keep the copy with you.

If the school district denies the evaluation, there are still options to appeal their decision.  A great and FREE resource is the West Virginia Parent Training and Information project in Buchannon.  You can call them at 1-800-281-1436, go to their website at www.wvpti.org, or see our link here at WHOLE Families.  They can help you through the appeal process.

The bottom line is that early intervention and special education laws are there to help your family get all the services your child needs to have a free and appropriate, public education.  Early intervention should help you get the best and most accurate diagnosis so that you can start your child on the path to successful school years – that is the point of early intervention!  So speak up! Because all of us parents with children who have special needs can tell you, practice your requesting muscles now.  Ask for full evaluations for children in early intervention, and be sure a qualified evaluation gives you the diagnosis that will ensure your child gets all future services.