I Don’t Want My Child to Be Labeled: Will a Diagnosis Help?

posted in: Special Needs | 27

I don't want my child to be labeled and will a diagnosis even matter?

I don’t want my child to be labeled….will a diagnosis help?

When we adopted our son at four weeks old, we knew he would likely have some problems due to his prenatal exposure to drugs and alcohol. We envisioned a “slow learner” who would need lots of encouragement, help, and patience. He was also born with Amniotic Band Syndrome but seemed to have won the lottery in that department, he was only missing a few parts of a few fingers and toes. So he wouldn’t be an A student and probably wouldn’t play professional sports. No problem. We would love and support him no matter what. 

As our son grew a little bit older, however, we began to wonder if we should have him evaluated for Fetal Alcohol Spectrum Disorder. His development was unsteady. He clearly wasn’t understanding language very well. At a  year old he still had his startle reflex and seemed completely impervious to pain (he would walk barefoot in the snow without flinching). We happen to live just a hundred miles from some of the world’s top experts in FASD (and I’m a bit embarrassed to link to their website because it looks so dated…what the heck, U-Dub?) Initially, Chuck and I were both against the idea of him being “labeled” mainly because there is no treatment for  FASD. Any damage caused by alcohol is permanent and unchanging. And if it can’t be treated, why label it? We also didn’t want him to become “that kid with FASD”. Whether or not he had FASD he was so much more than a diagnosis. We felt that by avoiding labels we were protecting him. 

Why Seek a Diagnosis?

If there is no treatment why bother with a diagnosis? While we felt this way in the beginning, we eventually came to realize there are certain advantages to having a diagnosis.

1. Labels can be a good thing.

Yes, our son technically has a “label” now and maybe some (a few?) people see him as that kid with FASD but in reality, this particular label helps to explain some of his behaviors. Think about autism for a moment (a diagnosis that more people are familiar with). Knowing a child has autism can often help people reframe behavior. They understand that an epic tantrum may be overstimulation or frustration caused by autism, not just a bratty kid. Our son rarely makes appropriate eye contact or answers questions in a typical way. He often acts like a child half his age. Sitting there in a dark hoodie, giving nothing more than a grunt in response to an adult’s question…without a diagnosis, he appears to be rude. In reality, he has trouble processing information. 

2 . Labels can open doors.

In our son’s case, having a label of FASD doesn’t open any doors. FASD is still poorly understood and recognized. Autism, though? If he had that label he would qualify for ABA therapy and summer day camp programs. We are hopeful, that in future, his FASD label will help him access more services.

3. Labels can help in school.

Our son started school in third grade (we were homeschooling everyone at that point). He was given an IEP from day one. You know what happened, though? By sixth grade, he had worked himself right out of his IEP. While this might be great news for some kids, our son desperately needs the support to succeed. When he no longer qualified academically (with many, many supports in place) we were able to keep his IEP under the “other health impaired” category, due to his FASD diagnosis. Without it, they would have removed the IEP, removed the support, and he would crash and burn. In this case, his label is helping him to succeed.

4. Labels can help at  home

Chuck and I have done the best parenting we ever had for our son in the last year. After extensive testing, we learned that he is struggling far more than we ever realized. We have “lowered” our expectations to a level that is reasonable. We understand more of the whys behind the way he acts. I no longer feel compelled to make excuses for him. He is who he is and we are doing our best. We are making more accommodations than ever, and everyone is doing better because of it.

In the fourteen years since adopting our son, we have learned a lot. We have learned he does indeed have FASD (and possibly autism). We’ve learned to make hard choices to help him succeed. We’ve learned we have to reinvent our parenting.

And we’ve learned that labels can help him succeed. 

How do you feel about labels? Do you feel like they help or hinder kids?

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27 Responses

  1. I remember hearing my mom say that she didn’t want my brother “labeled”. He clearly did and does have ADD. He’s never been treated and its been to his determent. When people say, “I don’t want my child labeled” its so often a sense of either “I don’t want people to think I messed up as a parent” or “I don’t want people to think less of my child or think they are bad/different/not as worthy.” People diagnosed in adulthood with ADD struggle with a lot of maladaptive coping mechanisms along with the self esteem issues of trying *so hard* and failing.

    But as you listed, there are many reasons that labels ARE beneficial. I have A LOT of different flour in my pantry. It’s labeled so that I know what’s in the clear mason jars. So I can make the food I want correctly and according to a recipe. So I don’t make nut flour cookies for my nut allergic son or delicious full of gluten cookies for my mom or pastor with celiac. They’re useful. And when a friend’s child was diagnosed with autism it did change my judgments and feelings about a little girl who seemed out of control and wild (also I didn’t have kids yet…). And it helped me be a better friend to her mom who was also struggling (and with that diagnose and treatment she has made HUGE strides!)

    I think we also in our culture are getting better and more empowered at not allowing “labels” be treated as detrimental attributes. Part of why I’m open about having depression and anxiety is because I know many people carry shame around from that and a.) I want to be a safe person they can talk to, and b.) For those of us who are more impervious to shame I feel its a gift to be a voice for those who can’t.

    Also—-mostly what we are talking about with “labels” are actually medical diagnoses of neurological or mental conditions, which our culture puts in a separate box from physical aliments. No one minds the “label” of having a heart defect. They mind having a heart defect! But no one would say to you about Apollo—do you really want to label him as a CHD child? That’s not a judgement. That’s what he has! And those children are labeled “warriors,” and that’s not a bad thing! But if its organic brain problems its suddenly a shameful thing. And that’s really sad :(. Because surgery can’t fix those things. They are hard, hard, realities and people and families need so much support.

    I was once told, frequently, that my depression was “just in my head”. Well, yes. That is in fact where my brain is. But everything is in our heads. Our breathing. Our laughter. Our joy. Our pain. It all comes from very complex signals in our brain. When I’m in a very depressed place it helps my friends to know that I’m not avoiding them, or being aloof. I’m just not in a good brain space, but I know being out with friends helps. So that’s what I’m doing. And I remember once disclosing to a room of newish moms that I’d been dealing with PPD. Two women burst into tears. They’d told NO ONE. So I wear my labels on my sleeve because people need to know they are not alone. And I think that’s important for parents of children with whatever disorder or diagnosis. We find our strength and ability to advocate, help, care for in having supports around us.

    Even the disciples went out in pairs. We are built for community, and labels are one of the ways to find the communities that fill our souls and guide our feet. It’s how we can be Christ to each other.

    • I always love it when you comment…you can often express things better than I can (or do). I have talked about in the past exactly that…there is a stigma to FASD that just isn’t there with a heart defect. And it sucks. While people *do* often view Apollo differently when they learn of his CHD, they do not look down on him. There is no judgement involved.

      And I agree…depression is in your head. As you said, your brain is in your head and so is your brain chemistry.

      Thank you for your astute words of wisdom.

  2. Our daughter needs extra support in school (she is now a freshman in college), and never wanted to have a diagnosis because she wanted so badly to be normal and do things the way other kids do. But the diagnosis makes it possible for her to get extra time on test and extra support that is essential for her to keep her head above water at school. It’s humiliating for her, but absolutely necessary. A hard thing for her.

  3. Completely agree. I was diagnosed with dyspraxia in year 2 and mum didn’t want me to be labelled at school. At the same time my adoption was going through so there were a lot of things happening. I often wish that she had told the school and I had got the help that I so clearly needed. Instead, I was labelled anyway as disorganised, messy, clumsy and a whole host of other things that are directly attributed to dyspraxia.

    • That is so hard! And you ended up being labeled anyway, but not getting any help 🙁

  4. I don’t see FASD or autism as a label. If you’re telling your kid they’re lazy, stupid, or good for nothing, you’re giving them a label which will be hard for them to get rid off in the years to come. As for health issues, it’s not a label, it’s a fact. He has brown hair, brown eyes and autism. Nothing can be changed about either, it’s a part of who he is. Having the right diagnosis is often crutial for all the reasons you mentioned and some others.
    Is he had kidney issues, nobody would ever consider NOT having a diagnosis Why having a kidney issues is not a label and autism should be?

    • Should have been “IF he had kidney issues…”

    • Perhaps. But there is so much stigma surrounding some of these diagnoses that is *very* real. There is no judgment if a child has CP because they suffered oxygen deprivation…but to have brain damage due to alcohol consumption?
      Also, some diagnoses (such as ADD/ADHD/ODD) are not even considered real by some (I know…I’ve met them in real life). These people often assume the discipline and a healthy diet will cure these (I know, I used to *be* that person). I know people right now who are choosing not to have their children diagnosed because they don’t want them labeled. I personally think the best thing possible is to have open and honest discussions.

      The difference between say, autism and a kidney issue is how they are diagnosed. A blood test or scan can detect a kidney disfunction…autism diagnosis is based on certain behaviors. Few people are going to question whether or not a blood test is accurate in diagnosing a kidney disorder. Many people will argue with an autism or FASD diagnosis.

  5. Hmmm, I have a deaf son. Perhaps that’s an easier label to wear than FASD, or many others. I would say I’m in favor of labels – of INFORMATION. As you said, knowing your son has FASD gives a new understanding to his behavior and responses.

    When my son was little, he chose bright blue hearing aids. Each time he got new ear molds they varied – blue, lime green, orange, etc. And we kept his hair cut quite short. There was no missing those hearing aids. And we wanted people to know he was hard-of-hearing, as they would likely give him more grace if he didn’t respond when spoken to. Now that he’s older, completely deaf, and implanted, he has chosen black CI’s and accessories… but not because he’s ashamed of them. He just likes the black “techy” look 😀

    But deeper than that, we believe in calling it what it is. My son is deaf. He is a great many other things (wonderful! intelligent! hard-working! kind! diligent!) but he IS deaf, and we call it what it is and we’re open about it. Sometimes when we don’t name something, it becomes something shameful and scary (so scary we can’t we can’t speak it).

    Again, I know that being deaf doesn’t have the stigma that some labels do, and it’s better understood than FASD and some of the other things that you and your readers deal with. That’s just my perspective.

    And Renee, BRAVO! You are doing a WONDERFUL job with your very varied kiddos! Well done!

    Julie

    • I can tell you from experience that saying your child is deaf does not carry the same stigma. I love that your son chose blue hearing aids, just as Kalina chose red for her first hearing aid 🙂 And on that note, Kalina and I have learned something. We have quit telling people she has “hearing loss” and started using the word deaf. Why? Because the “label” is something people readily understand. We have learned from experience that when we say “hearing loss” people don’t understand the impact his has on her. For whatever reason they see that as much less of an issue than “deaf”. In this case, a label helps us immensely.

      On another note, I can’t imagine someone not believing you if you said your son was deaf. You say your kid has ADHD or ODD (Oppositional Defiant Disorder) and people suddenly think they get an opinion on whether or not the child “really” has it or not.

  6. My mother and I were just discussing this, and I agree with your opinion and reasons for it.
    We have a relative who has a child, now in her 30s, who is bipolar and mentally handicapped. Her mother has been in denial nearly the girl’s whole life until now. She paid for tutoring and help in school and did whatever she could to keep her daughter out of special education. She paid people to pretend to employ her daughter, when in fact she was furnishing her daughter’s “paycheck”. She bought her a car and a home. The girl has no concept of herself as being special needs or needing help. Sadly, she is one of those “you can spot it a mile away” types. She lives in squalor, eats poorly, has poor personal hygiene, frequently gets into car accidents. You can tell just from watching her that she is not normal. Her mother is aging and cannot provide the help for her daughter that she once did. She refuses to get help for her. She will not take recourse to state and federal assistance programs for the handicapped. Her daughter desperately needs supervision for her own safety and well-being, and she’s not getting it. It’s very, very sad. As relatives, there is only so much we can do, and the mother is a brick wall when it comes to trying to talk honestly about her daughter’s limitations. If she had done things differently from the get-go, her daughter would probably have more of the help she needs. Labels, and ensuing help and treatment, could have taken this girl’s life on a whole different and much healthier course.The whole situation, even her daughter’s understanding of herself as a person, could be more realistic and healthy. I’m worried for this girl when her mom passes. It’s going to be a huge mess.

    So I say yes, label your child. I know there are stigmas attached, but I think the benefits outweigh them. Would you want to see them struggling through adulthood, their life a mess because you wanted to pretend they were normal? Or would you rather see them with the help the need to succeed at whatever level they are capable of?

    I really admire you and Chuck for the courage and selflessness you’ve displayed for your children. You really work to give them what is best for them and help them succeed. They are blessed to have you for their parents!

    • Emily, thank you for sharing a bit of your story. It is so easy to see that the mom was trying so hard to help her daughter….but in the end it sounds like it caused more problems. Parenting any kid is hard, and special needs kids are even more difficult.

    • I urge you to report her situation to adult protective services. This will help get the ball rolling in identifying her situation and getting her help.

  7. No treatment for fasd? Do you mean no cure? Seems there are many things done to treat.

    • Sunny, this is a great question. When our son was diagnosed back in 2005 there no treatments even, beyond speech therapy. Now there technically are treatments that are recommended (in our son’s case ABA therapy) which we cannot access because he doesn’t have an autism diagnosis. Our insurance won’t cover it and most places around here won’t even put him on their waiting lists because he doesn’t have an autism diagnosis. So, the one therapy that has been recommended for him, is inaccessible.

      • Wow, I’m sorry to hear that.

        One thing I learned about that FAS clinic listed above is the Diagnosis of FAS was discovered by my childhood pediatrician and another. Not so long ago it was realized the effects.

        Ps: I just moved back to your state from the state of your birth 🙂 Fun to be back here. Take care.

  8. We also rejected testing to label for over a decade with our daughter. Eventually though, we learned that she needed to do the testing through a pediatrician (in BC Canada) and that could only happen before she turned 16. So we had it done and completed just before she turned 16 — not to have the labels for their own sake, but to ensure that in her future if she needed support through government programs (she does) that she would be eligible (she is) and she wouldn’t be disqualified because we chose not to have her labelled as a child or teen.

    I am a member of the board of directors on the FASD Society of BC. The Society runs an assessment centre called The Asante Centre in Maple Ridge and just opened a second office in Surrey in November. I attended the grand opening as a member of the board of the Fetal Alcohol Syndrome Disorder Society of BC.

    The highlight of the open house that day was a special presentation by two men who told their stories. Both these men have been diagnosed with FASD. One as an infant, but he remembers not understanding that there was any meaning associated with that jumble of letters associated with him. The other man was not diagnosed til the age of 37. It cost $5000.00 CDN.

    Their stories were eerily similar. Both men concluded by saying that they encourage families to talk openly about FASD and what it means for the child growing up to avoid the child developing his own negative self talk and self esteem and destroying his self worth from within as he grows to be a teenager and the differences in cognition only grow larger and more obvious.

    But the other thing that struck me was that both men were so respectful of their parents (and all parents like you, Chuck and Renée). Staff and management at the Asante Centre confirm to me that parents cannot be forced to be open and talk about FASD if they are not ready. Neither of the speakers at the Grand Opening had families who talked about it with them growing up.

    There is a private facebook group that you might want to look into, Renée. It is called “Flying with Broken Wings” and it is for adults with FASD. Personally, as a parent of a child with autism, the most helpful information I got always ended up coming from an adult on the spectrum. Perhaps you will find this facebook group to be the same quality of resources for you for Mordechai.

    I am a friend of your mother-in-law’s. I will bring out some brochures/information for you and Chuck and Mordechai to her house that your husband can pick up tomorrow when he goes to get the girls. There is a poster in there from the Amen Clinics that it might be helpful as well for Mordechai to see to help him understand that whatever he is struggling with at the moment is not his fault. It shows an SPECT image of a healthy brain, and another one beside it of a brain affected by FASD.

    However, there is much research going on right now on the brain. There is a company (Posit Science) in the process of getting therapeutic credentials from the FDA for its brain games and their ability to heal brains after a traumatic brain injury or a stroke. These games (on http://www.brainhq.com) have never been tested with people with FASD. Why not? There is another company at http://www.AdvancedBrain.com which provides programming using music and/or rhythym and percussion to change the brain — to help the brain to heal itself from within. See “The Brain that Changes Itself” and “The Brain’s Way of Healing,” both by Dr. Norman Doidge. Fascinating books which have helped me enormously to not give up hope for our 31 year old with all her hopeless and defeating labels she got at 15½ years of age.

    I want to assure you that Jean does not speak openly with anyone who comes into their home about Mordechai and your private family matters. We are prayer warriors and she mentioned to me once in private about Mordechai’s difficulties after she learned that I was on the FASD Society of BC board.

    I hope I have been able to express the thought and care that has gone into the making of this post to you, Renée. I want what is best for Mordechai and your whole family,

    I will continue to pray for you and Chuck and all of your family. Merry Christmas.

    • Laurie,
      Thanks so much! I was happily surprised to see the FASD resources when Chuck came home with the girls. One of the best books I have read on FASD was Damaged Angels, written by a mom in Vancouver. I am so happy to see how much research Canada is doing with FASD. I believe they are moving ahead of the US in those matters. I appreciate the links and your thoughtful comment.

  9. While it’s a much less intensive issue, my 14-year-old son is most likely dyslexic. (If we lived in an English-speaking country, maybe we’d bother getting an official diagnosis, but we don’t, and he’s home educated, so no big deal.) I was quite against labeling, but as we began to be more and more sure he was dyslexic, I got a book from the library about dyslexia, FOR children, and read it to them. This was when he was 12, and his 9-year-old sister was reading at an adult level while he was still struggling. When I read it, they both started saying, “Wait–that’s just like L!!” (Neither of them had heard of dyslexia.) It gave my son so much more confidence, that he’s not “stupid,” but just has a brain that works in a different way from much of the world (and from all five of his siblings), and now instead of hating reading because it made him feel stupid, he’s pleased with what he CAN do…which means that he’s even bothered TRYING to read so much more in the last two years, that he’s now reading much, much better.

    AND, what I never expected…it made my daughter stop teasing him. So this label has been very helpful.

    • Our daughter also had a severe language-based learning disability label and I found a book called The Gift of Dyslexia. The book explained it as being a picture thinker. Not having “trains of thought” or “lines of reasoning”. Every word was a picture. Except the 300 or so words on the “Dolch” list which aren’t so easy to make into pictures. Think the, and, into, out, by near . . .Then I found someone who implemented the program in the book to give 3-dimensional pictures to all those little words. Part of the gift of dyslexia is that someone who has it is able to see something from all angles or any angle. Unaware of this gift, though, one can’t tell the difference between b or d.

      • It was actually after reading “The Gift of Dyslexia” that I decided to call it what it was. 🙂 And that picture in MY head of how a simple chair (like a squared lower-case “h”) is still a chair no matter whether it’s facing left or right or upside down was also very helpful for understanding how p, q, d, and b ARE all the same to someone with the out-of-this-world awesome spacial thinking that my son has. My spacial thinking is pretty good, but he’s the one I call on if I need more of it. 😉

        • How exciting that you know that book as well. Our daughter made clay models of each of the dolch words, complete with actions, settings and arrows to get a picture for each of those pesky little words. It was very helpful for her. I’m so glad to hear the book was useful for you, too, Sheila.

  10. Last spring my son was diagnosed with Depressive Disorder and honestly I’m glad for the “label/diagnosis” because it helps us understand his needs, both at home and at school. I just think the more people come to terms that no person is perfect and just because you have a diagnosis doesn’t mean people are better than you.

    • Yes, there is still so much work to be done to change people’s attitudes.

  11. Louise wandmaker

    Thank you for sharing. As a mum of 7 (and wanting more!) I have 2 step sons living with us who have fasd and 2 of my sons have asd. Thank you so much! I am so glad I found this blog!

    • Louise, thanks for commenting. I am so glad to hear that writing this may be of some small help to you. If you type FASD in the search bar above, you will find many posts on the topic.

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