Suggestions for Getting a Diagnosis
So you think your child is on the Autism Spectrum
You suspect something is amuck, you are either online day and night or you go to any lengths to avoid it.
You say..."I just cannot believe it. All the information is the same... but different. My child HAS eye contact. She is social. Maybe her hearing is off. She does not answer to her name. How can they tell this early? I cannot believe my cousin just blurted this out to me. Just because her son is autistic does not mean everyone else's child is too. He is a not even verbal. She talks and walks. I think I will wait and see. That is what our pediatrician thinks. He thinks that the last set of shots she had were not connected to her high fever and dazed stare. She cannot hear us. Maybe she needs tubes... Today she has a sore stomach."
"I could not accept
the consequences of
waiting for others to
do something
about the tragedy
I saw unfolding
around me every day."
Dr. Steven Gutstein
Director, Connections Center
Before you do anything, it is a good idea to get a working knowledge of your child's rights. The Individuals with Disabilities Act (IDEA) was most recently revised in 2004 and was renamed the Individuals with Disabilities Education Improvement Act. This law specifically mentions Autism as a "condition that constitutes a disability" and therefore mandates each state to "provide all eligible children with a free and appropriate public education that meets their unique individual needs." It also establishes a role for the parent or caregiver to plan and monitor his or her child's individual education program. This means that you are entitled to be treated as an equal member of the team that has been tasked with developing and implementing a plan that contains all the elements your child needs. Autism Speaks offers some great information on your child's rights as well as suggestions on how to cope.
What's our best advice? Get your child looked at NOW. You can always go back to doing nothing, but you can't go back and do something. In this circumstance, waiting is a dreadful decision. Ask yourself this simple question: "If she were making this decision for me, what would I want her to do"?
If your child is under the age of three, call the early childhood center nearest you. They will have the phone numbers for the early intervention alliance that will talk to you and send out people to take a look at your AWESOME little person. Sometimes there is a waiting list and sometimes it is the next day.
If your child is already in school or over the age of three, get in touch with the social worker or school psychologist at his/her school. If you cannot get that person to call you back, go down the list until you get someone to respond: the teacher, the counselor, the nurse, the assistant principal, or the football coach. Get hold of someone and don't let go until you have an answer.
What they will do
If your child is not in school yet, the Early Childhood Staff will play with your child. They will bring all of their own equipment and supplies. Much of the information they start with is from you.
- What are your concerns?
- What are your challenges?
- What does your worst day look like?
- What works best?
Most of the tests they have are standardized, used by many, the same way.
If your child is already in school, the school staff will bring you in to have you answer a battery of questions about your child. They will also have your child's teacher and any supportive staff in the classroom answer some of the same questions. Members of the assessment team will also observe your child in a variety of settings, including the classroom and possibly the home. The school psychologist will arrange for a series of standardized tests to be administered, such as the ADOS, IQ test, or a sensory integration profile. If applicable, an Occupational Therapist (OT) or Speech Language Specialist will also be asked to observe. Some districts may also have access to an autism specialist, who may also be included.
The outcome
Once all the testing and observing is done, a meeting is held with the entire team and the parents. Typically, the school psychologist mediates this meeting and goes through the findings of the team, including strengths and weaknesses. All members of the team including the parents are invited to give input. The ultimate goal of this meeting is to produce an Individualized Education Plan (IEP) for your child. The IEP is written once a year and reviewed every 6 months. Retesting is done every three years.
Public vs. Private
So we have described all the information if you choose to take your diagnosis through the public system. You can also go through the private sector, all the work described above would typically cost you about $5,000. That would get you a diagnosis.
Only the staff in your school district can write, approve, review, or implement an IEP, so you must still engage with the public sector to accomplish this. Within the IEP, qualifying services are listed and plans are made for your child. For instance, the IEP may state that your child is to receive OT services twice a week for thirty minutes each.
Although the actual diagnosis may be only $5,000 through the private sector, the suggested therapies and follow up could cost you upwards of $200,000 per year if you include OT, speech, bio-medical treatments, dietary adjustments, sensory integration therapies, and community based activities like swimming.
Start with your district.
Review their recommendations.
If you feel all of your child's needs have not been addressed, then ask for a review. If you get the same results, then take your child to the private sector for an assessment if you can afford this. When you get the results of the private sector assessment, take this to the school district and ask them to review their recommendations again.
Keep in mind that if the district alters the IEP, but you feel like your child could still use some supplemental services (such as more OT hours per week than they are recommending), you can find a service provider in the community and have them do an assessment.
Before you approach the private sector for services:
- Check with your private insurance (such as Blue Cross Blue Shield or Minnesota Cares) and find out what they will and won't cover.
- Then, check into getting Medical Assistance (MA), or TEFRA if you live in MN, for your child. MA will pay for most medically based treatment, such as OT, speech languange, chiropractor, or specialists, but you have to go through your private insurance company first before they will pay for something. Also, any provider that you want to use has to be a provider for your insurance company and for MA. If they aren't, then you would have to pay out of pocket if you still choose to use that particular provider.
Whatever path you choose to travel, be prepared to be persistent, assertive, and patient. Autism falls into an unusual slot right now. Some feel that Autism should also be a medical diagnosis given all the biological things that can go awry, but it is currently classified as a psychological disorder.