Should son be "officially diagnosed" with Autism?

Bec - posted on 06/25/2011

I decided to personaly as the school system pushed for it for funnding and it is also helpful to get funding medicaly for your kids as the support they need is not cheap and in some cases you can link in with support groups for the family to and to do this you may need a diag. depends on the group.

Sarah - posted on 03/22/2011

I think you should pursue a diagnosis for several reasons

1) An ENT is not trained to diagnose autism. They can suspect, but they cannot formally diagnose.

2) there are little things that you can qualify for once you get a formal diagnosis from a psychiatrist, neurologist or developmental pediatrician.

In my son's case, he was diagnosed at 11 years old by a private psychiatrist AND the school psychologist at the same time, without the two parties comparing notes. Once he got his diagnosis, he checked in with the school therapist several times a day to discuss anything that was bothering him, etc For the next school year ( 6th grade) he got an aide in several classes. He was her main focus, but if he didn't need her, she helped the other kids too. For tests he got extended time for them ( to reduce anxiety and stress).

he also got $4,000 a year in local/state/federal funding for things relating to his diagnosis. This included compression shirts for his sensory issues, medication co-pays, doctor co-pays, etc. It would also pay for things like stress balls! He has a "support admin" who points us toward other things and administers the $$.

Honestly, a label is a label...knowing that he has Aspergers doesn't change the things he does that drive me NUTS, but it does explain WHY he does them. As he's gotten older, more people have found out that he has a spectrum diagnosis, but it isn't something that we announce to everyone we meet. I have only "played the autism card" ONCE since his diagnosis. He was seeing an endocrinologist for a growth issues and the practice had a bad habit of scheduling us with one doctor, then switching us to another doctor ( who was overbooked). After we waited in an exam room for 90 minutes only to speak to a doctor whose accent was so thick that my son could not understand him, I complained to the office manager. I told her that we only wanted him seen by the original doctor OR the PA and never the foreign doc. I told her it was "because he is autistic and he needs the consistency" ( instead of I dislike the doctor AND his thick accent)

Debbie - posted on 03/22/2011

zachary is 2 now and he would use his fingure to ask for everything or just point with his eyes only one word for everything and he still do but yes the says he has asds and is n thearpy now he has his up and downs but is getting better i think u should better saft than sorry.

Michelle - posted on 02/01/2009

Quoting Julie:

Should son be "officially diagnosed" with Autism?

Our oldest son just turned three. When he was two and still not talking, his pediatrician sent him to have his hearing tested thinking that was the reason. His hearing was fine, but the ENT specialist suggested he was autistic. We were able to get in-home speech therapy through our Area Education Agency and he recently started 3 yr. old preschool (he is in special ed). We have seen some progress, but he still does not use words to communicate.

I am wondering if we should have him diagnosed to determine the severity of his autism or just continue what we are doing since he is able to receive help without an actual diagnoses. I am curious to hear from other parents. I have heard people say that we shouldn't allow him to be "labeled" as autistic since he will carry this lable the rest of his life even if he is able to function normally.

Julie,

as everyone has stated, getting the diagnosis is key for the sole purpose of getting the needed services for the earliest intervention.

I do have one thing I want to point out, having an 17 almost 18 year old on the spectrum, the only trouble we have had is not being able to get life insurance for him. We were denied based on the fact he had an "autistic" diagnosis. This puts him in a high risk catagory that makes him uninsurable. I am a little concerned about this same bias when he gets out on his own, but I do know with his diagnosis, there is government assistance he can apply for if needed.

Good Luck!

Michele - posted on 02/01/2009

I definitely agree that you should have him tested and make sure that he receives all of the educational benefits the school system has to offer. My son was diagnosed during Kindergarten, and due to various other circumstances at the time, he wasn't placed in an appropriate program until he was in second grade. Since then, the changes in him have been remarkable. He is at a school that only contains students with autism (in varying degrees) and is in a class with other children that have similar issues. I could have not gotten him into this program without the official diagnosis of PDD. Without the diagnosis, he may be still be in the class that the school system had him in before moving him to the specialized school, which was a class of students with extreme emotional disorders. I can not imagine the detrimental affect this may have had if he had stayed any longer that the semester he was there. Get the official diagnosis, learn how he needs to learn, it won't be the same way other kids do. Don't let the idea of a label bother you, you don't know how long the help you are getting now is going to continue. Without an official diagnosis, your son may be cut from assistance when there are budget issues, staffing issues etc. The label protects him and allows him to get everything he needs, not just today, next year, but down the line when he is older.

Good luck.

Jessica - posted on 02/01/2009

Please be aware- An Educational Diagnosis and Medical Diagnosis are different. One is through the school and one is through the medical community (doctor/therapist). Each one opens different doors-so it important to get both. Even if your still considering if you want to get the "label" get your name on the waitlists in the meantime-it may be up to a year before your child can get in- and that may delay treatment. Early intervention is key!

Kellie - posted on 01/30/2009

Julie,

I have twin boys who were diagnosed with autism when they were 2 1/2, they had no language, severe self injurious behavior, no socialization with others, etc.  At their time of diagnosis, I felt like you, don't 'label' them, but on the advice of my doctor, I did.  It was the best thing I could have done.  'Labeling' them Autistic opened up so many services...I recieve Katie Beckett, am a part of a CEDARR center, they recieve HBTS, outside OT, plus all the services in school (they have an IEP).  You will not be 'labeling' them, you will be helping him and yourself get the treatment needed.  My boys are 6 now, and still on the spectrum, but doing wonderfully.  They have speech, friends, laughter and love in their lives.  No more self injurious behaviors, and so many other fantastic accomplishments.  When they are off the spectrum, and they will be, they will be termed PDD/NOS, or delayed, which still isn't bad...it will get them what they need.

Billie - posted on 01/30/2009

Yes, it will help with what services he may be eligible in school.   Good luck in your journey and feel free to drop me a line back. 

Jennifer - posted on 01/30/2009

I absolutely agree with the comments above! My son was diagnosed with Aspergers in October and it has opened so many doors for him. Honestly, we weren't aware that half the little things he did were related because we had no clue it was an Autism Spectrum Disorder. Everyone had told us they thought it was just ADHD, which he has as well. It is so important going into school as well. My little guy is in Kindergarten and while he's proficient in all the subjects and material they're learning he's lacking in social skills and frustration tolerance so he's having a lot of behaviors. It's very important to get a Special Edcuation Evaluation and then an IEP in place to make accomodations as necessary.

Hope this helps!

Trudy - posted on 01/30/2009

I have 2 boys diagnosed with Autism.  My oldes is 7.5 and the younger just turned 5.  They were both diagnosed when they turned 3.  I would definitely have your child evaluated.  A diagnosis will open up doors to the treatment options that are available to you.  Also, from everything I've read, the younger you start with therapy the better the outcome.  From my experience, parents who advise not to "label" your child either don't  have a child with special needs and therefore do not understand or are in denial...No parents want to hear that their child has Autism, but you want to give your child every opportunity in life and the best way to do this is to get a diagnosis and start therapy as soon as possible.  Both of my boys are severly autistic and nonverbal - until about a year ago when my older son started to say simple words and is now taking off in strides!  Good luck to you.

Angela - posted on 01/30/2009

i think it is important to get an "official" diagnosis even if things are going well presently. Schools are not required to provide services without a diagnosis, and at some point, the school may not be accomodating. Also, if you are here in the US, you can not sign up for the autism or DD waiver without a formal diagnosis. Although the waiting list for these services is very long and your child may not benefit from them for many years, the sooner you have a diagnosis and go on the list, the sooner your son will come eligible. As for not wanting to "label", the fact is that we all go thru life with labels. I would far rather my child be labeled autistic than some of the other labels people have used without knowing his circumstance (brat, immature, stupid, spoiled, etc)

Laura - posted on 01/30/2009

definatly get your son a diagnosis so he can get the help he needs. my son would not has progressed as much as he has if it hadn't been for his amazing teacher at durham trinity school. i was once told by a friend that if it were her son she'd not diagnose him or send him to a special needs school so that he looked like he was 'normal',...what the hell is normal anyway. autism isn't a label it's part of your child. i'm glad my son has had a diagnosis.

Christine - posted on 01/26/2009

Do not hesitate definately get your son diagnosed to determine the severity of his autism. This will only benefit your son in the future for school and other resources that he may require currently. I would do this as soon as possible.

Suzee - posted on 01/26/2009

I have a 50 year old brother who has Asperger's. When he was younger, there was no diagnosis for Asperger's. My parents knew something was wrong with my brother and had him tested repeatedly, but with no real diagnosis. So everyone just thought he was weird. And he was taunted by kids his own age. One day about 10 years ago, my sister said the our brother was kind of like a high-functioning autistic person. So I googled those words and came up with Aspergers. The description fit my brother to a T. He had all but two of the criteria. It was such a relief to finally understand what was wrong with him. And to understand better how his brain works, so we could better manage him. I so wish that he had a diagnosis when he was younger, so that people could have understood him better and not judged him by standards that he couldn't possibly have lived up to.



We have not yet had him diagnosed. We're working on that now, but it's next to impossible to find diagnosticians for an adult. We would like this diagnosis because ultimately it will qualify him for services as he ages and is less and less employable.



Just another perspective!

Lauren - posted on 01/25/2009

I agree with others, have an evaluation done by a neuropsychiatrist to find out what he needs. It is about getting the proper therapies, not just having a label. A label gives him access to the right therapies!

Jodi - posted on 01/25/2009

The sooner you do the official testing the better...You need to know what kinds of help he needs, and in order to get some of it, you are going to need the actual diagnosis.  There are also some areas of help he will need that you won't be aware of until he sees professionals - occupational therapist, speech therapists, LD teachers,  - does he need desensitizing, stimulation, auditory therapy, dietary changes, etc...

Betty - posted on 01/25/2009

Where do you get help from in WI?  My son was just diagnosed with Aspergers. He is currently home/un schooled.

Betty - posted on 01/25/2009

Get help and have it determined. It's not about what people think, it's about your child and having the right intervention if he needs it. Determining what is what will give you more options.

Melissa - posted on 01/24/2009

My son has Autism and is 3.5yrs old.  I believe that visiting a Developmental Pediatrician would be beneficial to find out exactly what he seems to have and possibly getting with a Psychologist who can administer the ADOS - a play-based Autism test.  The school system does not like to lable children under the age of 6 with an "Autism" label.  They feel the child could possibly change since they are so young.  The absolute best advice I can give you from personal experience with my child is to find an ABA therapist to work with your son.  ABA is Applied Behavior Analysis and it uses specific motivators to help your child to use his words.  My son barely said anything when we began a year and a half ago.  Now he can request me and ask for basic items and some short phrases.  Speech therapy is good but does not use motivation, which is what these kids need.  Please contact me if you have any questions about this. 

Best of luck.

Susan - posted on 01/24/2009

You definitely want to get him tested so that you know the extent of his disabilities and what kind of services he might need.  He may need nothing more than he's getting now, or he may need much more.  Whatever his diagnosis, the earlier you start therapies, the better a result you will see so don't delay.  If you don't want him labeled in the school system, you can get a private diagnois (we did at our local Children's Hospital).  My son is high functioning Aspergers and he receives therapy through our county.  He is OK in school without special adaptations so we have not requested a school diagnosis.   His teachers and the school counselor know about his issues and have been cooperative without needing it to be in his IEP.  If he needed more assistance, you bet we'd go for an official school diagnosis.  The important thing is to 1) find out what services your child needs and then 2) do whatever you need to to get those sevices.

Jessica - posted on 01/23/2009

Find out if your county or state has any family support services available.  If so, you will need to get a diagnosis to get the support.  And if it is anything like the program in WI it will be worth it.

Martha - posted on 12/24/2008

You should have your son tested but not for sake of saying he's labeled but for the sake of getting the goverment funding to pay for any therepy he's going to need the younger he is the more money from the goverment he will get for anyone you wish to help him you do not have to pay for this the goverment will and you choose who helps your son. Once they are 6 the goverment cuts the funding you will only get 500 a month in BC because they say the school will take over which I have found is not always true I had to fight to get service for my son in the school and did not get help until I wrote a letter to student services even though my son was hitting other children and leaving the school premices and going on the road which the school did not tell me about until one or two weeks after the incidences and he did already have his diagnoses at the time but because he is high functioning the school thought he doesn't need any help, I had to fight for everything for him in school but I found my hard work for him is paying off he's gone from saying only ten words at age three to being on the Honor Role at age ten in grade five, it takes a lot of work and effort but with goverment help and parents help it's all worth it for your child.

Kristina - posted on 12/24/2008

Our son just turned four, and we are getting him evaluated to test for autism as well. I think that a formal evaluation would be a good thing, because it would give you a firm direction in which to take with his schooling as he gets older. It would also give you some direction in how to help him, if he is autistic.

Mandi - posted on 12/24/2008

Having a formal evaluation by a developmental pediatrician would be the best answer to your question. The evaluator will look at several possibilities for your speech delay offer suggestions as to what you should do next. Just because he is evaluated doesn't mean he HAS to get a label. If you explain to the Dr that you would like to hold off on a diagnosis until after a 6 month follow up to gather more information and follow his progression. Many will want to do it that way anyway. As a special education teacher of preschool age children, and mother of a son with aspergers, I can tell you the Drs I work with are in no hurry to label until it is necessary. The key is getting the evaluation soon. Most developmental pediatricians in my area will only evaluate children up to five years old. After that it is a much more complicated and timely test with a psychologist. Good Luck!

Alicia - posted on 12/23/2008

What makes you think he is Autistic? He must have other signs? The label on a paper realy helped us open doors when it came to therapy.. That was the first thing therapist asked for.. Autism is a hard road.. Hopefully your kiddo just has a little speech delay? Best of luck!

Ginger - posted on 12/23/2008

I would get him tested as soon as possible. You'll be able to get services through the school and if they have a label they know what kinds of services he needs as opposed to guessing what will help. It may take awhile between getting a diagnosis and getting services which is another reason I'd get the diagnosis now.



I have a 16 yr old (almost 16 anyway) and he was diagnosed with Aspergers right after he turned 13. Yes, he's really high functioning. I knew something was wrong since he was in kindergarten but everyone kept telling me he's just immature. Middle school was a nightmare before the diagnosis and now school is scrambling trying to make up for lost time with services he should have been receiving the whole time. Things would have been better for him if he received services when he was younger because, like Lisa said, they can retrain the brain. At our school an outside psychiatrist makes a diagnosis and then the school autism committee had to officially diagnose him. So in our case the outside dr diagnosed him in Feb and he didn't receive services until Jan after the autism committee spent 6 weeks with their testing. He was under special ed for 'emotional problems' so as soon as we told them the dr said Aspergers she started writing things down. "Now we know that he'll need X, Y, Z"



He may be able to function normally when he gets older and I pray that's the case. That would be an awesome outcome! What a sucess story!

Chelsea - posted on 12/23/2008

My son was just diagnosed with tourettes and as I was talking to his doc she told me that its very important for them to be diagnosed for a couple reasons. 1, so they can understand that their “normal” isnt like everyone elses and thats ok. 2, so the school HAS to cooperate and make adjustments and accommodations to school work, testing, etc. Without a diagnosis or IEP the teachers (some, not all) don’t help the kids and then they start to feel dumb.

I have a functioning autistic daughter who is 12 now but she has been getting help since she was 3 and a half. She has gotten so much help and doesnt even get pulled out of class anymore. Her IEP’s are short and goals are set each year that she meets. One of the 1st tones we set when she was in 1st grade is that she would make eye contact 50% of the time and she would raise her hand and participate in class 40% of the time. Now, the only thing that she is “helped” with is a modification on tests.

A diagnosis will help a lot. It is WAY different than when we were in school. A label really isnt known to anyone cept the teachers and they are not allowed to say anything to anyone about the child or their issues. Kids don’t know and wont know unless your child wants to tell them to help them understand why he may do certain things.

Lisa - posted on 12/23/2008

My son was diagnosed with aspergers at age three. He is now 8. He had difficulty with speech as well. Because of this diagnosis, he has recieved more help then what I expected, even though I did not accept the fact that he had it until about 2 years ago. I have been told that aspergers is a form of autism, not straight up autism. Because of this it is possible to "retrain the brain." I think that you should have him tested, definetly. But be sure to take him to a specialist! A normal family doctor is usually not the way to go.

My son has been in special needs classes since first grade, but as of this year, his 3rd grade year, he is in general ed 80% of the day and began riding a general ed school bus as well. His speech is wonderful and he is able to take change now as well. Loud noises were a huge issue as for him, but he can now participate in baskeball with no issues with sounds. I guess what I am trying to say is even if you get a diagnosis of aspergers, that doesn't mean you can't change the outcome. Just keep strong and learn new techniques and after time, you too will see a new child. Good luck to you!

Natalie - posted on 12/23/2008

I had so many people tell me to not have my daughter 'labeled'. Here is my issues with that...if she didn't have the 'label' she wouldn't be getting ANY HELP!! She needs help in school...she needs occupational therapy, she needs an educational assistant. If your son is 3 and not speaking you definitely need to have him tested. If nothing else it will giv e you a better understanding of how to help him. He may be able to learn sign language or picture language. Not having a diagnosis will just leave you wondering what to do, how to help him. Besides if he's an autistic then he's an autistic. What difference does it really make?. He is your son and you love him...nothing matters more than that. :)