Tell or Not Tell of Diagnosis

My soon-to-be-13yo was diagnosed at age 4. He's made enormous progress in that time. Most days, he can "pass for normal", but the fact is it's only normal on the outside. His brain has and always will work differently, even when he's putting on that impressive show.

We waited until he was about 6 or 7 to explain his brain to him, and the poor child could not have been more relieved. He had been thinking there was something REALLY wrong with him all that time.
To keep it from a child, or expect a child to keep it from others is a terrible, terrible idea, in my opinion. It sends a clear message that they are defective.

We focus on the positive attributes of ASDs, and I now have a very confident, usually happy, often brilliant young man who impresses everyone he meets.

Not telling the school and pediatrician is a HUGE mistake. You're not hiding it from the school- they already know (hence the identification and IEP), they're just not allowed to tell you what they suspect the diagnosis may be. I promise you the Kindergarten teacher, speech therapist, OT and school psychologist will figure it out within a month. I know my team always did when I was a school psychologist! It's what we're trained to do.

As for the pediatrician... again... silly. Why don't you want her to know? This is your child's primary care physician and she should have a complete record of his medical history.

Hiding things doesn't end well and your private psychologist doesn't have a crystal ball and I am very sorry that he or she has led you to believe that your son will be "cured" in 3 years. It's not ethical to do so. Your son doesn't have a disease to be cured, he has a syndrome which by definition is a cluster of behaviors.

This IS on his medical records- the psychologist keeps records, the OT keeps records, the speech therapist keeps records.

I can only tell you from the "other side of the desk"... parents think they are hiding a diagnosis, but in all reality we figure it out pretty damn quick and at some point you will be asked by the school if you have had your child privately evaluated b/c they have "noticed some behaviors". Do you intend to lie? Not a good path to head down...

Your child will progress much faster if ALL clinicians working with him (in school and privately) are working together towards common goals, not "undoing" eachothers work unknowingly.

I believe in being open and honest about medical conditions like this. Our son has ADHD, OCD and a number of other conditions and we've always told his school. That way, they understand him better and know certain behaviors are due to his conditions. Teachers really seem to appreciate our openness and willingness to collaborate with them.

Our son also doesn't get "labeled" a bad child, instead of one with disabilities. I've never been afraid of having others know his medical conditions. I've only found people to be much more understanding when they know the reason for certain behaviors.

I think you should be honest with everyone, the docs, schools, family, etc. How can they be expected to provide the best service possible for your child when they don't have all the facts. I have 2 kids on IEP's and probably a third soon. These are not "labels", they are medical diagnosis and everyone needs to be aware. Good luck.

i think you are doing your child a disservice by NOT telling people about his condition...the more people you have on board, the more help and tools you may have available to you....

I'm not worried about "labels" but I am worried about you trying to protect your son from a perceived threat...when I believe that threat doesn't exist...I think you need to talk with the school and his teachers...get as many people involved to help him as possible!

personally, I would tell his regular dr. She needs to know in order to help treat your child in the future.

As for the school, someone should be told. They may have teachers that are better at handling high functioning children and if you don't tell him, he may not get the opportunities that would help him most.

Being ASD is not a bad thing. It is a term that is becoming more and more mainstream. The more it is out there and not 'in a dark closet', the better adjusted your family and those around you will be. ASD is not a dirty thing, and the more 'normal' you are about it, the more 'normal' your life will be.

M.

Do you want your child to feel that you are too embarrassed to tell anyone? That's what you are setting up. You tell people that matter. It is their legal responsibility to keep it to themselves. You can only get for him what he needs if the community who can help guide him and give you feedback know and are allowed to talk to you about it. Don't cripple him with your perceived stigma.

If you had your child diagnosed by an outside service and discovered he had a learning disability - say, a reading comprehension issue - would you keep that from his doctor and his school? Get all the help you can and don't try to hide it. Explain it to him on a level he can understand (maybe - you need extra help in XYZ, etc.) Secrets are never good.

Why would you not tell the school and pediatrician. Children advance when
everyone works together. If the school starts asking questions, will you lie
to them. Not the way I would want to take. One lie leads to the next etc. and then you cannot remember what you told and to whom you told it. Are
you embarrassed by your child. That is the message you will be sending.

I agree with all of the other responders, especially Krista P. It's not about labels, it's about sharing valuable information so that those who work with your child can work in his best interest. You won't be fooling anyone, and you might inadvertently contribute to a situation where the therapies that he is getting at school conflict with what you are doing outside of school.

Hi S., I understand the dx can be shocking. But, personally I think you need the re'evaluate your OWN feelings about your son's ASD. I think it's a mistake to 'hide' it.

There is a world of help just waiting for your son at every corner. His teachers/doctors/caretakers may not really understand what he needs if they do not know his dx. You'll ALL be working together as a team to get him the help he needs.

Surround yourself with families who understand.

I wish you the very best at the start of this new journey!

:)

You are going to have to have it documented in his medical records if, since you are paying for everything out of pocket, you ever plan to file with social security (which you can do, by the way) to help with the bills and medications if needed.

Having it in his medical records is not the same as a label in 'school,' however, the school should also know. There is a LONG time between kindergarten and 8 or 9 years old.

It is what it is. There is no real "normal." Hiding it makes it seem bad. No good comes from shame.

I would tell ANYONE who is involved with my child's care and learning. PERIOD.

His doctor NEEDS to know about this...whether you are paying for it out of pocket...he NEEDS to be aware of what is going on, any meds, etc...

There is ALWAYS a reason to report to your Dr...you never know how something may interact with it...your dr is treating your child....he's not just some number - he's a human being and help is needed - tools and outlets..

It's not about a label - it's about HELPING your child.

You have to be okay with his diagnosis if you ever want him to be okay with it. By keeping it a secret, it makes it sound like you aren't okay with it. You said he might be able to "pass as normal" and that kind of breaks my heart. He is perfectly "normal" as himself. Who does he need to pass for?
I look at it this way, if you are afraid someone will lable him before they get to know him, give it two weeks without saying anything. Then call a team meeting at the end of two weeks and let them know at that time what his issues are. They will either already have an idea and see what a great kid he is anyway, or they won't know and will think he is a great kid that they can now better serve because they know what he needs.
It's fine to be on a "need to know" basis, but you have to be honest with yourself about who needs to know!
What your son needs is acceptance, both at school and at home.

As everyone has mentioned, you would be helping your child by letting ALL of the people involved in his care know what evaluations have been done and what services he is receiving. You can have his teacher/therapists talk to his private speech/OT and develop a plan or decide what things he needs to work on and in that way maximize all the services he is getting. The fact that he is receiving already speech and OT at school, (even if you were told his working diagnosis was DD), makes it likely that for the school district his eligibility for services IS Autism. Only psychologists/psyquiatrists can give him the clinical diagnosis, not the school district who did his IEP, since their role there is from an educational perspective and not so much a clinical one. Regardless, as someone else mentioned, the people in school who work with him and know him already KNOW. The most important factor, regardless of the label, is early intervention. Again, your pediatrician probably has received some information, since part of IEP's also ask for the pediatricians name and number/address. Since he is high functioning, he probably has room to improve and do very well in the next couple of years, which is what your psychologist or whoever said. You don't have to go out and tell the whole world about his diagnosis, but definitely the people involved in his care in order to maximize the help and type of services he gets by making them integrate as a working multidisciplinary team.

I think it's better to educate his teachers and regular Dr. so that they can be aware and sensitive to his needs. I agree that when you hide a diagnosis, that is just adding an element of shame, thus perpetuating the whole 'label' issue . Also, he will not have this negative label his whole life as you seem to think.

Also, what Krista said here; "Your child will progress much faster if ALL clinicians working with him (in school and privately) are working together towards common goals, not "undoing" each others work unknowingly."

I'm surprised your Ped doesn't know. When my son was diagnosed with PDDNOS, which is in the same umbrella ASD, a letter was sent to his Ped and to the school from the Psychologist who diagnosed him. I am with all the other parents that hiding it makes it seems as though it's something to be ashamed of and it's not at all. I don't know how OK works but in NE a kiddo can only get Sped services until the age of 9 under a developmental delay verification. Don't let Sped be a negative thing. It's something to help kiddos. My son is in the general ed classroom and I assert I don't want him pulled out all the time as I feel that the learning takes place in the classroom. I was actually glad to get the "label" to help his teachers better understand how to reach his needs. I'm going into Sped as a teacher as well and I work with a lot of kiddos with different verifications. I always want to know what their verification is, not to label them, but to better understand what their needs might be. I know one size does not fit all, but it helps me get what they need. Also, other moms have said what I agree with. He does not have a disease that needs to be cured, but he will have this forever. Better to embrace it and help him know that it is part of his life, but it may be his diagnosis, but it does not define WHO he is. Embrace it and celebrate it. I say with pride that my son has PDDNOS b/c it has helped me become a better person. It can be a great thing!!! :-)