How to Test Son for Autism or Any Other Abnormal Behavior?

Updated on January 25, 2011
A.D. asks from Sammamish, WA
16 answers

Do you contact your school district? Is this free? Are they qualified professionals who administer tests? I am worried that someone not qualified might make a rash judgment and label my son and he has it in his record that he is autistic when he isn't. And if he is indeed autistic, how long does the record stay with him? Just curious if anyone has gone through this. I am terrified of finding out yet also relieved because I will know.

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So What Happened?

Thanks everyone for your replies! After reading all the posts, I think deep down I always knew something was different about my son but maybe I was too scared to find out. And it is very difficult because his behaviors aren't that different, just subtle differences that nobody, not even his teachers picked up on. But I live with him 24/7 so I know him best right? I feel horrible that I waited this long. What if I had gone to a specialist sooner? Could he been better by now? I was also scared because we have individual coverage for health insurance and I am scared they might find out and cancel our insurance. All these thoughts going through my head...I did make an appt. with someone at the hospital. There is a 4-6 month waiting period. Geez...I will update when we find out anything.

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M.P.

answers from Portland on

Yes, there is an office that tests children for learning disabilities. It is named the (County in which you reside) Intermediate Education District Office. The school district is mandated by Federal Law to provide this testing and whatever services are needed so that the child can be included in school. The service, provided by the county and not directly by the school district, is part of education and is free. The program is named Early Intervention. The people involved have received specialized higher education to do these evaluations. They are qualified professionals who do administer the tests that I've read about in books on learning disorders including autism.

My granddaughter has been diagnosed as being ADHD by her pediatrician based in part on her teachers' observations. Her second grade teacher was unaware of the services of the Intermediate Education Service District. I'm guessing that your previous post is also unaware. My granddaughter has an IEP (Individualized Education Plan). I don't think she went thru the Intermediate Education Service office.

My granddaughter was evaluated last school year and an IEP put in place thru the committee process described by Mary of Mary and Paul. thank you Mary for describing this process. I wonder if this process is relatively new. I was unaware of it's possibility until the end of the school year.

My grandson was tested by them when he was 2 1/2. He has speech apraxia and has been receiving speech therapy, occupational therapy and physical therapy. He's 6, also has an IEP and is in a special education class working towards being main streamed. Even tho he has characteristics of autism they have not formally diagnosed him with autism. They are seeing that he's provided with whatever services the school district has to provide for autism. He was in a therapeutic kindergarten. His mother has access to social workers and parenting education.

As usual, the school district is limited in what services they can provide. However obtaining private service is expensive and not always covered by health insurance. My grandson has received some help thru Kaiser Permanente, his health insurance coverage.

I can relate to being frightened to find out if he is autistic. However, it is important to find out as early as possible. You don't say how old your son is. Some characteristics of autism can be normal at an early age. Also some characteristics can be the result of other learning disabilities. I'm glad that you asked the question.

More government funded services are available before the age of 3. Until he was three my grandson had speech therapy everyday and his mother was assisted by a social worker specializing in parenting assistance. When he turned 3 his therapy was reduced to twice a week if I remember correctly and the parenting assistance was based on my daughter's requests rather than automatically scheduled.

I don't know everything with which the school district is working with my daughter and grandson. I'm "just" the grandma. :) From my reading I think my grandson also has a sensory processing disorder which he manifests by seeking really strong touch. He also runs into doors and walls and is easily frustrated. I've learned to brace myself for flying across the room hugs and to always give him "bear" hugs. To also be more patient in my expectations of his behavior. Another mother reminded me that autistic kids are uncomfortable with eye contact and this may be because they can't read facial cues. I know my grandson is less able to pick up on any social cues than other children with which I've worked. To be able to talk with a specialist would be a great help. I think doing so would relieve your mind.

I was able to focus in my reading and in the way I treated my grandson because of the testing and explanations resulting from contact with the Multnomah County Intermediate Service District. I highly recommend that you call and make an appointment. You can always get a second opinion from someone in private practice. It was my grandson's pediatrician who recommending the Multnomah County Intermediate School District Office. She also gave my daughter the name of someone in private practice.

You asked how long the record stays with him. It is only as long as he needs special help. I've found teachers and administrators to be very understanding and helpful. I adopted my daughter as a special needs child and therefore have had long term experience with schools. I also taught briefly as a young adult.

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A.H.

answers from Portland on

We went through this (and still are) with our son. I don't know where you live but your county should have an early intervention service, which is usually linked to the school system in that it is free and kids who are in early intervention receive special ed services through school once they start kindergarten. The people who do the evals are professionals. They are mostly speech pathologists. This is all free. I would also suggest you ask your pediatrician for a referral to a developmental pediatrician and/or pediatric psychologist for medical testing. The testing through early intervention is different than a medical eval nd the diagnosis of Autism Spectrum Disorder is very different when given as an educational diagnosis versus a medical diagnosis. It's very confusing, and my husband and I were worried about the label problem, too. Our son was labeled "ASD" from an educational standpoint but we have had him very thoroughly tested and he did not meet the criteria for a medical diagnosis. One thing you have to realize is that you may not really know if your son has any "diagnosis" or not until he is older. My son has been in EI for 3 yrs and we still don't know for sure "what he has." In a way it doesn't matter b/c a lot of the therapies are the same and address certain skills and behaviors rather than certain diagnoses. I hope this helps. It can be scary and overwhelming, but you will never regret getting him extra help, even if he doesn't end up needing it in the long run. The only thing that could hurt is ignoring a problem and waiting until it's too late to make the maximum impact. Best wishes to you and your son.

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G.R.

answers from Spokane on

Hi A. - I am glad that you are starting to ask more questions. I went back & reviewed some of your previous postings about your son & concerns about him being shy, no friends, repeating things, OCD, etc. Hopefully the best thing that you can take from all of us is that you are not alone!!! Yes it is a little scary when dealing with the unknown especially with our kids. I will do my best to help give you some tools to help you walk through this process and get the answers to the questions that you seek. Feel free to shoot me a note if you need anything else.

One thing that will help you along the way and keep everything in order is to keep a journal of what is going on (his behavior, appointments, evaluations, conversations with drs, teachers, etc). Make sure that you keep detailed notes especially on conversations (date, time, who said what, etc). This will not only help with order but will help you process (deal with your emotions) as they occur.

First & foremost talk with your peditrician about your concerns, as schools are not set up to diagnose "medical" issues. Now the school can/will be involved to help with it but that is not where you want to start. Talk with your son's teacher & see if his behavior/learning is different than those in the class. See if they have some of the same concerns and ask them to write them down for you to share with the doctor (keep a copy). Use this info on when you follow the below steps.

Ok, back to the DR... Before you visit with the doctor compile a list of all of the concerns (including any that your son's teacher might have), this makes sure you dont forget anything & will possible help the doctor to ask other specific questions. If you have a general doctor who does not have much experience dealing with special needs kids, ask for a referral to a developmental peditrician/specialist. Many times they are located with big hospitals or university based centers & will be the ones with the most up-to-date knowledge of the vast expanse of disability areas. I do not know of your medical coverage but usually private medical or Medicaid will cover these visits. If you do not have this coverage, see if you qualify for Medicaid (state medical coverage for kids). If you dont have coverage or do not qualify for Medicaid then continue with some of the below steps.

When you meet with the peditrician/specialist and review your concerns & list of questions they will work with you on what steps to take place next - medically speaking. More than likely they will recommend evals/therapist to help with an official diagnosis (pediatric OT is a great place to start too). They can also help dispel any fear you have about the possibility of receiving a diagnosis - if you do there is another process that you will emotionally have to go through - parental grief. If you end up at that point, just remember that you are not alone & that nothing of this is your fault! Your son is a beautiful child & he is who he is. Many special well known "important" people were "special needs" in their life Here is an interesting article listing out many different disabilities that did not stop them - just as a voice of encouragement! www.disabled-world.com/artman/publish/article_0060.shtml

Ok, back to your questions... After you have talked with the peditrician or have begun the process of evaluations talk with his teacher to share with them what you are doing. Ask the teacher and follow up with a written letter - keep a copy - to participate in the Child Find (this is FREE and Federally mandated) and initiate a school Care Team meeting (to review what school testing they can do). Child Find does screenings to see if a child may have need or concerns in select areas (vision, hearing, speech/language, cognitive, etc). This is usually a joint effort with state, county & school district staff - by doing it this way you also open the doors to find additional services that may be beneficial to you & your son. You would then be referred with his school to do additional evaluations. Now remember that school's test for many things and yes, typically, their staff is trained to give specific evaluations (one of your questions). When a school looks at a child to see if they qualify for additional help in school (via a 504 or IEP) they are looking at the educational part of your son not the medical part - this is why you do want to have the specialist also reviewing him. There are many kids who have a disability but it does not interfere with their education thus they may only qualify for a 504 not the IEP. (I know that this is way too much info right now and sorry but I want to give you as much info to answer your questions as possible).

Now when you get the results back from the medical & schooling sides you can get everyone in on the same page so they all understand what is going on with your son (usually during an IEP Eligibility meeting - bring a close friend with to help take notes for you as this is a very emotional time for all of us parents and you need to remember what all was said). Typically schools again will not give a kid a medical "diagnosis" but they will qualify a student based upon the evaluations given. If he does have a diagnosis that can actually open many doors and opportunities for your son.

Don't stress about any type of diagnosis being in his school records - as they are private and protected by law! Also there are usually 2 or 3 different files for students (general info/education, medical, special education, etc), these are kept in different areas and are safe. If for some reason that a school did put incorrect information into his school records you can request in writing that it be removed and you can review any and all of his records at any time to confirm what is there. For medical records again those are private and protected by law (HIPPA).

Now as your son gets older it will be him who he chooses to share with about who he is and why he is the way he is. This is not something that you should worry about at this time. I am just glad that you are taking a big step forward for your son. Many kids his age do have some struggles (my youngest is one of them) but with early intervention and supports many make wonderful leaps and bounds forward. Use this time as growth for him but you too. Also check your local area for a support group for parents of special needs kids - they are a wonderful source of strength but also resources! Your world is about to get bigger! God Bless

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D.A.

answers from Portland on

Prior to the age of 3, the county will test and service the child if needed.

After age of 3 (because they are preschool aged at this point) the school district administers the tests and provides services.

A friend's son just turned 5 and was tested thru the district for social and speech disorders. He has been getting therapy since and it is helping both the child and the parents.

Many of the posts seemed to read to me, that the school district isn't qualified to test for disabilities, but that is untrue. All school districts have child psychologists and the schools are assigned a child psych. as well. For elementary schools, the psych. is often shared between a couple of schools. At the middle school where I worked, we had a full time psychologist until the budget cuts in 2004. Then ours was shared as well.

The school districts are qualified professionals trained to administer and interpret these tests. They also listen to the teachers, pediatrician and parents and child about the concerns.

It is much easier to attend to a child's needs in the classroom if the teacher knows what is happening, just as it is for the parent. Also, a child with a learning disorder can receive extra help and learn ways in which to study that might be overlooked if not diagnosed.

The school district and county services are free and the labels are only there to provide as much support toward the child's education and education placement to benefit the child and not for any gain on the district's part. The school district does not get anything out of providing for your child, other than the satisfaction of helping a child succeed.

But, at age 2 our doctor did a screening for autism. Granted, many toddler behaviors are often similar to some autistic behaviors, but your pediatrician is the best first source and then you can contact the county or district to only talk and find out the answers to your questions first-hand, instead of from us. The consultation will be free, as well.

Good luck to you, but do try to find out, especially since you are aware of some behaviors that you are concerned about. A parent knows their child and if you are questioning this, get him checked through whatever means you can.
D.

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L.H.

answers from Portland on

the school and/or your family doctor can order a series of tests. He may be eligible for special services. I always feel it better to find something out than to wonder. A great resource is the portland asperger's network - it is a group of parents with children with autism spectrum disorder who are very nice and helpful. I have gone through this - last year - with my now first grader. Breath, have some tests done - it is better to know either way.

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K.K.

answers from Portland on

I would talk to your doctor before the school. Let your Dr. know that you want to be 100% sure that he has it, and has it noticably enough to label him with it before you go telling the schools, etc. My son has ADD... he is treated for it medically with medication, but for 4 years it was no where in his school or medical record that that is why he took the medication. It is there now only because he is to the point that he can get by without medication if he has a little extra help from the school... a tutor that checks in with him every hour or so, sits with him to help him focus, etc... and the only way to get the funding for that was to put in his file why he needed it. However, it still only states that "_____ has been TREATED for ADD".
You are right for not wanting the wrong label on him. Labels can be a nasty thing.
If your Dr. can not help, or if your insuance won't pay for a specialist through your Dr's office... try your local mental health department. You may have to put him in counseling, but they will determine if he has a condition or simply behaviors...a nd get to the bottom of either.

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B.D.

answers from Seattle on

Talk to your child's pediatrician first. Get a check up and then a referral from them. That's how I was informed on how to get my son into get tested. He's now in behavioral therapy and is getting tested. This record will probably stay with him the rest of his life. If he does have Autism, remember, it's not the end of the world. There is help out there for you so that you can work with your son. :D Hope this helps. *hug*

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M.P.

answers from Medford on

Dear A.,
To answer your question accurately I would need to know a couple of things. I worked in a school district for 9 years as a Child Development Specialist. So I will tell you what I observed: Often the teacher and parent would have talked about each of their observations and concerns. Either the teacher or the parent can initiate a child study team meeting. At this meeting there is usually a lot of people, but really, all people who have devoted themselves to helping children. So who would be there would be: The teacher, Principal, Special Ed teacher, Speech therapist and school psychologist. You would have an opportunity to express your concerns and hear from others what is within normal and what to be concerned about based on their professional experience. They would tell you what tests are available and you would decide wether or not to pursue that route. Families in our area have also gone to Pediatric Psychiatrist for their opinion, or a second opinion. If the team suspects that Autism is a possible diagnosis they would also bring in the districts autism specialist to do some observations, meet with you, meet with your child.
I hope this is helpful. Speech Therapist in the school actually do a lot of work with autistic or aspergers children. And outside of school if you have the means a pediatric occupational therapist can be extremely helpful.
As a person who sat on the team I was, as was the team, very aware of the grief that comes for a parent when they find out, indeed their child is autistic or on the spectrum. And like you say, it is also a relief. Know that is to be expected of yourself, seek out support from a support group or an individual therapist if this should be the case. So many people have gone through this and if in fact this is the case for you, you don't have to figure it all out alone, or be alone in your loss. Also, I have heard how much, when people come to terms with what is, they feel they have also gained.

I hope this is helpful.
Mary
Married, Mother of Fraternal twin boys, therapist p/t.

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W.C.

answers from Seattle on

Begin with your doctor. He/she will lead you to the best solution. You can also go through your school district. They will have initial screening, but not complete screening. They will however probably have links to resources.

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S.H.

answers from Seattle on

I fought long and hard to have my daughter tested. She has High Functioning Autism, which her pediatrician didn't believe she had, that was finally diagnosed last May. She will be 13 this March.

Basically, I called her pediatrician and told her that I wanted a referral to Seattle Childrens for Dr. Orlich (She really listens to parents, specializes in this field, and also has a child on the spectrum... so she is definitely qualified.) It doesn't really matter if your doc agrees with you or not. You are entitled to a referral if you believe that your child would benefit from an evaluation. As I understand it, you can also insist that your child undergo a full psych evaluation through the school district, but I'm not sure how that works. I can tell you that my daughter's school put her in the Autism and Social Thinking classes well before her evaluation came through. She was on the evaluation waiting list for so long but had been on an IEP since she was 8 months old for various learning, physical and developmental delays. It takes a long time to get evaluated because so many people need this, so get on the list ASAP, if that is something you decide to do.

Autism is a life long thing... it's not something that can be cured, per se, but that we have to deal with, live with and teach our children how to live the best they can with it. Many kids with Autism grow up to lead pretty normal lives while others need special considerations and assistance. It really depends on where he/she is on the spectrum. The other important thing to remember is that occupational therapy, support agencies, and extra support at school can make a huge difference in these kids' lives and really helps educate us as parents on how to help our kids grow into their full potential. Kids on the spectrum generally have some learning delays, difficulty with social interaction on one level or another, usually have sensory "issues" and many have sensitivities to casein and gluten so they require a special diet.

For my daughter, loud noises from multiple sources (something common in a house with 7 people living in it) send her over the edge, she has to have something in her mouth at all times (we chew a lot of gum here), she has no sense of personal space, and she is always grinding her feet into the carpets or smearing lots of lotion wherever she can. Baths are very therapeutic for her, but it is a 4 hour process from start to finish so we can only let her take sit down baths on Saturdays. There's more, but those are the highlights.

Other kids can't stand to have tags in their shirts or won't eat food that is touching other foods on their plates or run into everything in their path because they simply like the feeling of running into things or they don't have a sense of space. I have one friend who's daughter just rocks and rocks and rocks in whatever chair she is in because she likes to feel it hitting her back and head. The more emotionally stressed she is, the harder she will rock. Each child is different in the combination of sensory issues and other "autistic characteristics" they may have. Most OT's will recommend that you start your child on a "sensory diet". You have to remember that there are also kids who may not be on the spectrum (like my middle son) who have sensory issues... so that doesn't automatically make them "autistic". It's the combination of so many things.

It is so important to have your child evaluated if you have the slightest inclination that he may have Autism. If he does, it will open so many avenues of help and support for him and for you and for your entire family. If he doesn't, it will give you peace of mind and a direction to go in. The other possibility (and I don't know your case) is that he may have something else that can be addressed. I'm not a professional, but I do know that Autism isn't always the only answer to reasons that children may not fall within the "averages". I can tell you that getting our diagnosis has changed our lives and given my daughter so many more tools for her life through her OT, counseling and her IEP at school. I am so glad I was an advocate for her and fought to get her the help she needs. Don't be afraid to find out... It will give you, your family and your son the tools you need too. Good luck. Be an advocate for you son... no one else is going to and you know him and his needs best.

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M.S.

answers from Portland on

The best thing to do is to get a referral from your pediatrician.

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V.F.

answers from Las Vegas on

Your pediatrician will give you a special test which is questions you will answer about behaviors your son has. It is very good to get him test i wish i did my son sooner. It actually takes a long time for your child to be diagnosed because no doctor(neurologist) want to make a rash decision . But your son will get free therapy through the government with a speech therapist , occupation therapist, even a nutritionist if you want. After they turn three they transfer them into the school district and help them in a special class so he can hoepfully be in a normal class. the sooner you get the therapy the better chances your son will live a normal life and no one will know they are autistic.

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H.B.

answers from Portland on

1st contact your physician to discuss, they should be able to refer you to a specialist if needed.

I believe the school district keeps an eye out for this type of thing, but should not be "diagnosing" in my opinion.

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C.R.

answers from Seattle on

School district employees are absolutely not qualified to test for or diagnose autism. We are trained to recognize some indicators so that we can alter our teaching strategies and meet the needs of those already diagnosed with autism. So, you could ask your son's teacher if he/she has seen signs. However, it's not necessary. If you want an evaluation for your son you will need to go through his pediatrician. He/she can get the ball rolling for you. It is likely that a physician will want to involve your son's teacher in the process to see what his behavior is like at school, so it's not a bad idea to talk with his teacher. It's just not the place for testing or diagnosis. Good luck to you.

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D.T.

answers from Portland on

Only your doctor can diagnos your son's condition. I would take him to your doctor and if he doesn't diagnos for autism or other behavioral problems, he should be able to recommend someone. I know a couple names of child pyschiatrists, but I don't know enough to recommend. If you can't get a name from your doctor, contact me through mamasource and I will give them to you.
You need to write a letter to your school requesting an evaluation. By law, if you request it in writing they have to do the evaluation. I would keep a copy for yourself. Keep copies of everything from now on. I think they have 45 days to have a team meeting with you. It is though, a long and slow process. I would put in for the evaluation soon. This evaluation will determine if your son qualifies for services that will help him in school. Most services are done in the classroom and do not interfere with his learning. It can only help if he does have a problem. Most schools the goal is to have the kids be in the mainstream with the other kids. There is no "sign" on their backs labeling them. I have two kids, 10 and 15 who each have iep's. One no one would ever know, except for the teachers. Just homework modifications and such. The other is in a special classroom because he hasn't been able to function in a normal setting. He is just as smart as any other kid, is at all his benchmarks. And I get a kid in a small classroom with one teacher and two or three aides. The more help you get, with doctor, or school, the better your son will be.

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M.L.

answers from Seattle on

Check with the pediatrician. It's a medical issue so the ped can refer you to the right people to get a correct diagnosis if needed. His record is his record. If he's diagnosed medically, that's part of his record for life.

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