Labeling Kids with Special Needs- How Much To Share

Dawn Davenport


I have a love-hate relationship with labels. They can help our children get the help they need and can help us find the support of others in a similar situation, but they can also come with the baggage of stigma and preconceived ideas. I worry about the long-term impact of labeling kids.

labeling kids with special needs-how much information should we share with the schools

On a blog we posted about over-sharing (TMI (Too Much Information)- Should We Tell Our Child’s “Story”) we received this thoughtful question.  I’ll give my thoughts, but this is one where I’d really like to hear how you have handled similar situations.

My son has FASD and ADHD and I often need to bring this to the attention of the school personnel-am I out of line to reveal this information? His older sisters have stopped talking about the mother very much, but for them, I don’t mention the mother’s alcoholism as it did not affect them prenatally since it started after they were born. I leave that to them to tell as part of their story if they choose. But, since it impacts my son’s daily life, I feel I have the right to inform people who need to know. Yes? No? Maybe??? Mama B

Mama B, the questions of labels is one that a lot of us face, regardless whether our kids are adopted or not. We live in a label happy society. In my experience, if your child is the slightest bit different from others, it’s easy to find some expert to attach a label. Many of us find ourselves and our kids swimming in an alphabet soup of labels—FASD (Fetal Alcohol Spectrum Disorder), PTSD (Post Traumatic Stress Disorder), SPD (Sensory Processing Disorder), ODD (Oppositional Defiant Disorder), ASD (Autism Spectrum Disorder), LD (Learning Differences/Disabilities), ADHD (Attention Deficit Hyperactivity Disorder).

I have faced the issue of labels with several of my kids and have handled it differently with each child. I don’t think there is a single “right” way since it depends on so many individual factors—what degree your child is affected, the age of your child, how stigmatizing the label, and if the label itself is necessary to get your child the help he needs.

The Need For a Name

Labels helped me with researching how to help them on my own.

I’ll admit that I actually wanted labels for my kids since labels make it feel like a definitive diagnosis. It is frustrating to know that something is wrong, but not have a name.

Labels helped me with researching how to help them on my own and gave a shorthand to what they or her education and often throughout life. This may be necessary and useful, but shouldn’t be taken lightly.

My general approach is to keep labels out of permanent school files if possible.

Keep in mind that when we are talking about learning disabilities, if the school system does the testing, the test results will become a part of your child’s permanent record, regardless of what you want. With one child with less significant learning issues, we opted to have the educational testing done privately so that we controlled whether and how much to share with the schools. With another child, we started with testing by the school system but found it to not very thorough. The most thorough testing we had done was at a nearby university psychology department for a nominal cost.

Labels Can Stigmatize

With my child with less significant issues, we have been able to get all the help needed from the schools without sharing labels.  With another child, we readily shared labels and test results in order to get the help he needed. With that child, at the beginning of each school year (and throughout the year) we meet with his teachers to paint a full picture of his strengths and weaknesses.

Our son’s labels are not particularly stigmatizing but could limit what his teachers expected of him. We stress that we want his labels to provide support, not limits. I’ll have to be honest and say that our successes have been mixed with some failures, but all in all, the advantages of sharing have outweighed the disadvantages.

Weighing the Advantages of Sharing with the Disadvantages

Mama B, only you have enough information on your son to know how to weigh the advantages and disadvantages of sharing his labels. It can be a rock and hard place.

Mama B, only you have enough information on your son to know how to weigh the advantages and disadvantages of sharing his labels. Fetal Alcohol Spectrum Disorders (FASD) can be both stigmatizing and limiting. I think most people do not understand the spectrum nature of FASD, and assume that all children with this label have Fetal Alcohol Syndrome (FAS), and further assume the worst possible outcome for FAS.

From an education standpoint, is the label of FASD very helpful? I would assume that the effect of the alcohol exposure on his learning abilities and behavior is the most important for the school to know, rather than the cause. Would it be possible to be vague on the cause rather than specific (“rough start in his early life before he came to us” rather than “his birth mother was an alcoholic and he has FASD”)?

Attention Deficit Hyperactivity Disorder is not a particularly stigmatizing label anymore, but sharing this label will put you under considerable pressure to medicate your child. If he is already on hyperactivity/focus medications, this is not much of a disadvantage. The school will need to know if he is taking medications (especially if administered during the school day) or if he needs significant modification in classroom settings and testing. Also, it will be important to share this information if he has an Individualized Education Plan (IEP).

With Whom We Should Absolutely Share

I should add that I think we should share all information we have with medical personnel since any information may be needed for future medical issues. I also don’t worry about labels defining my kids in medical situations.

Those are my thoughts.  How have you handled this situation?

Originally published in 2011: Updated in 2018
Image credit: gfpeck
Image credit: Cuba Gallery
Image credit: Alissa Maghopoy

27/06/2018 | by Dawn Davenport | Categories: Adoption, Adoption Blog, Blog, Fostering, Fostering Blog | 7 Comments

7 Responses to Labeling Kids with Special Needs- How Much To Share

  1. Avatar MamaBev says:

    Dawn, I have yet to find a teacher or principal who is familiar with FASD-and this is 5 years into the adoption!! Most are openly not interested in learning! Go figure, when that and drug exposure are rampant in the children in the lower grade levels. But, no, they attempt to “control” these brain damaged kids like the teachers of my era did-consequences for actions. So, not only do the children struggle with what is happening to them but the parents are blamed for the child’s actions. (I have gotten phone calls telling me I need to get my son to sleep earlier at night, he tends to wake up and get into things and is then tired the next day. Meanwhile, I am snoring away, completely unaware of his nocternal wandeerings!)
    Until the school systems are willing to come into the 21st century of reality of birth for many children, I feel I will be a lone voice advocating for these children in the local school system. I haven’t been able to attend the meetings of the FASD group due to work schedule. I am starting the process for an IEP or plan 504 because he will not survive middle school without some type of accommidations! Wish me luck!

  2. Avatar John says:

    I appreciate your posting on this issue. My son has a string of labels and I often am in the situation of deciding how much to share. I had not thought about describing symptoms rather than labeling and I think that may work well with school personnel. I have found that teachers make judgements on my son’s abilities based on the number of labels he has. I don’t think they mean too or that they don’t want what is best for my son, but I guess they just can’t help but think that he has huge problems because he has all these labels.

    Love your show and your blog. Both have been so helpful to me in parenting my boy.

  3. Avatar Lori Ingber says:

    It’s an interesting topic. I think there are as many ways to handle the situation as there are families created through adoption. When we began the adoption process my husband and I decided we would only share details of our daughter’s birth, birth parents and any surrounding medical issues with our immediate relatives, beyond that, it was her story to tell. We decided when she thought it was appropriate to tell, she could do so.

    After a while this didn’t sit well with us. For starters, we were never going to omit the truth to her, so she has heard the story of her birth (and everything since then) since the day she came home (at 12 months). When was she going to decide to tell? At 5 years old? 10? 15? When would we deem it appropriate? At that point we decided that by telling HER to not tell something meant it was something to be ashamed of. So we tell, of course we don’t tell everything to everybody, but we do tell.

    We’re comfortable with our decision and that’s what I think is most important.

    • Avatar Dawn says:

      Lori, good point. I agree parental comfort is important because if we feel comfortable then this is the message we’re sending to our kids. I do think there are labels and information that shouldn’t be shared with many others and shouldn’t be shared with school personnel. They key is deciding on an individual basis what is best and then, as you said, being comfortable with that decision.

  4. Avatar HappyMom says:

    I’m so glad you’re addressing labels and how much to share when, Dawn. This is a highly relevant topic to us because our daughter is undergoing testing right now for FAS, which adds the additional trickiness of implicitly exposing some sensitive parts of her early history that I don’t want to share with the world. Her birth mother’s history is her business, and she should be able to share it (or not) at her discretion… but if she gets the FAS label, then *fwam* we’ve exposed that part of her history to anybody who knows her label.

    That said, labels are helpful things. They help us understand our kids better and help us succinctly communicate their special needs to professionals (medical, educational, adoption, behavioral) in their lives.

    My hope with our daughter is that we’ll find some labels that can be used that don’t betray her story (executive dysfunction, etc), like you said in your blog post… but we’re too early in the process right now to know for sure.

    Anyway, to me, the question of who and what to tell divides in the following ways:

    1. Close friends, close relatives
    2. Friends and acquaintances
    3. Educational and medical professionals
    4. Adoption professionals (like your social worker or a counselor)

    I feel like it is in our childrens’ best interests, generally, to be very open with numbers 3 and 4, more guarded with 1 unless they are known to be trustworthy, and very private with 2. But I guess that also depends on the social stigma that surrounds your child’s particular labels.

    • Avatar Dawn says:

      I like how you’ve broken down the categories for sharing labels. I would take medical professionals and add them to the adoption professional category. With school personnel, my preference is to talk about “symptoms” and how best to work with my child, rather than using the labeling short hand. If you need extra services, this is not possible, but for many common sense solutions, this works fine. For example, rather than saying that Susy has ADHD, I would prefer to say that Susy tends to loose track of class and does better sitting on the first row. Now if Susy’s ADHD was significant and we needed the teacher to spend a lot of time working to keep her focused or she needed an IEP, then I would go ahead and use the label. FASD (fetal alcohol spectrum disorder) is a particularly tough one to decide to whom to share the label. If you plan on using this testing to get extra services for your daughter in school, I think you should talk with the testing professional about how to write her/his report and whether it is necessary to include the term FASD. The symptoms are what need attention from the school, not the cause. Or at least that’s what I think. I welcome parents who have faced this specific issue to weigh in since they’ve lived it.

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