Parents concealed my diagnosis from me?

Post Reply New Topic

So I recently figured out I was on the spectrum after about two years of college so I went to get a diagnosis and found out I'm high functioning autistic. Looking back on my childhood I began to realize there were so many signs; the echolalia, the "fidgeting" as my parents called it, and my outbursts/"bad jokes". I always thought I was just introverted but then I realized when I was comfortable in an environment I would become more animated and lively. Some of those aspects, especially stimming, echolalia, and over processing would emerge when I was in my more comfortable state (which usually allowed me to operate better).

I seeked out more information on ASD and learned that it could be diagnosed at a young age and I started thinking about all the stories my parents would tell me about how I behaved as a child. The fidgeting, the lack of verbal communication, the humming/sound imitations, constantly escaping my crib, the random laughing, and the lack of social interaction. Then I began to vividly recall a memory from when I was a child of being taken to a facility with all these toys and doctors but I don't remember why I was there.

So I asked my mom if I had ever been diagnosed with any conditions as a child and she just said no and immediately ended the conversation, it was a really strange feeling like she was lying. So being a bit nosey like I usually am I searched her computer for clues and there is a reoccurring note about the "block of ice" she has with me and I don't know what that means. Recently I made a mistake where I lied to her about something silly and she got extremely mad at me and was about to go on one of her rants which naturally puts me in distress (I start pacing, losing eye contact completely, twisting my fingers) until I said "well haven't you ever lied to me about something?" and she again immediately dropped the whole thing.

I suspect my parents figured out I'm autistic but concealed that information from me, attempting to normalize me. Now I'm not sure what to do. I honestly don't care/am not that angry, its just I'm not sure what to do now. I haven't told them I got diagnosed, and I'm not sure if it really matters. I don't want to confront them on this issue, they've already acknowledged repeatedly that I'm their "special" boy and now it feels like there's some context to what that means.

But why lie when I ask the question? Especially if its information concerning me.

I have the same suspicion. I'm too old to have been diagnosed as a child because I'm 55 and in the 1960s the only autism being diagnosed was the severe kind. Anyone else was flagged as some kind of problem child.

But I do feel that they kept something from me. I too recall visits to some kind of doctor who asked me questions and made me do certain tasks, even something to do with taking off and putting on my shoes.

My parents seemed to treat me differently and as if there was something wrong, different from my siblings. The family seemed to "know" something I didn't know. I wasn't encouraged in a career even though I was very capable academically, while my sisters and brother were all guided into choices for a life path.

My parents are both deceased now and I'm estranged from the rest of the family, so I will never be able to ask anyone what the truth was.

In my own case, it wouldn't have been an Asperger's diagnosis as there wasn't one in my day, despite Hans Asperger's having established the parameters for it long, long before.

I'm not sure if it would have been autism either because, as I said, in those days the only autism thought of as autism was if a child was completely and clearly deeply impaired and challenged.

It may have been some other diagnosis equally as stigmatizing (in those days sadly many things were considered a stigma). Whatever it was, my parents seemed to feel a stigma regarding me, and I picked up on something.

I will never be able to know. I've tried to access school records but mine will all be destroyed by now. Medical records may also not go back far enough into the pre-digital age.

I think you should sit down with your parents and have a serious talk. Approach the subject calmly but with a serious intent to find out what you have a right to know about yourself -- because you do have a right to this information. You are 22 now and you have a right not to have this kept from you.

Maybe they didn't want you to use it as an excuse to not try and maybe they didn't want you to feel broken or they didn't agree with the diagnoses or couldn't accept it. Mine hid lot of my diagnoses from me other than telling me I was deaf as a small child and couldn't talk and that was my only explanation for why I'm different but it didn't explain any of my other odd behaviors but I was eight then. When I asked my mother why she didn't tell me I had ADD or dyspraxia or sensory processing disorder and language processing disorder, all these labels I was given in 4th and 5th grade even when I would be asking then what was wrong with me, she got defensive saying she didn't know what was wrong with me and if I don't like it, too f*****g bad. My mom will also tell me I was just innocent than saying I missed social cues and didn't get the hint or misread situations or say the wrong things.

I don't know your parents and how they treated you but mine always treated me the same as my brothers and didn't make me feel any different and they wanted me to feel normal and didn't want me to think there was something wrong with me. She also had me do classes like pottery or gymnastics to help me so I wouldn't feel broken even though several adults have told her I should be in the special league or be in psychical therapy. It seems common for lot of parents to not tell their kids about their disability and one of the reasons is thinking they won't understand it or that they will just use it as an excuse. Since my mother kept lot of labels from me as a child, I think she would play dumb and say she doesn't know when i would ask what was wrong with me and why am I so different. Like she thought I wouldn't figure it out if she kept trying to tell me I am normal and keep saying she doesn't know whenever I would ask. Parents out there, your kids are not stupid, they will figure it out even if you don't tell them and still pretend they are normal and like everyone else and make it seem so. They just won't know what is wrong with them. I say if a kid is starting to figure it out and start asking you about it, then tell them if they have a diagnoses than playing dumb.

I don't know your parents so really anything I would say is going to at best a guess.

There are so many reasons possible for not telling you initially that I would have trouble even narrowing this down. We didn't tell my son right away for a number of reasons. One was he was so socially unaware that he didn't know he was unusual relative to his peers. Almost all the kids in his classes had pulls out of class for various things so even being pulled for speech and OT didn't ring any bells for him. (He still doesn't think he is different) It really takes awhile to think about how to word it when you not only can't start with "You know how you are different from other kids your age. Well, here is why..." but this would actually be new information.

The other thing for us was that we are surrounded by people who are culturally unwilling to deal with this information in a constructive way. My husband had undiagnosed ADD/ADHD and his dad is certain they beat it out of him. First off, that is a barbaric way of looking at neurology; and secondly, I can assure you he still has ADD/ADHD. My son had a lot of echolalia at the time of his diagnosis, and the last thing I wanted was him outing himself to people who would attempt to interfere and cause more problems for him and undermine his self-esteem instead of being supportive.

In addition, I really have ambivalent feelings about the labeling itself. Everyone has strengths and weaknesses, but AU/AS has a particular profile and it is helpful to be able to use it as a frame of reference. It is nice to know I can ignore the NT milestone list's time brackets instead of fretting over them. We certainly needed the label for when my son was in public school to give him some measure of protection. On the other hand, the labeling doesn't tell you everything. You still have to know your own child's traits and treat them according to what works well for them.

Many times the label can be used against you because people will use it as a stereotype and tell you to do or not to do things that may have to no relevance to your child but they think they have to be done that way b/c of the label. So, to me there is something dehumanizing about putting too much emphasis on the label.

Anyway, in the beginning, for the above reasons, I talked to him only about how different people have different things they are good at and different things they are bad at and that some things are going to be easy for him and some things are going to be harder, while giving examples.

I have attempted to broach the subject since but he is totally uninterested and will try to turn the subject back to special interests, if I try. We don't hide it. I have WP in my browser a good deal of the time, and my husband and I talk about autism in front of him. (I am unofficially diagnosed and my husband is aspieish in addition to the ADD) My son doesn't want to join the conversation, but that is Ok.

As far as your parents go, I can't say what their issues were, but now that they hid it so long, they panicked, and then they lied. i don't know if you can get a candid conversation from them now because they are likely to double-down on the lies. You can try and you may be able to break them down, but I don't know. Maybe if you tell them about the diagnosis and tell them you are not mad if they withheld the information but it would help you understand yourself if they could be honest now.

That said, I would be sure that what they say about the diagnosis would be productive (or at least not damaging) before I disclose. There are some people who can't manage it, and if you think it would harm you more than help, given what you know of their natures, I would hold off.

Your parents did the right thing by bringing you to specialists who could uncover what was going on. They did the right thing by endeavoring to make sure that you had access to all of the things that any other kid would. They did the right thing by no undermining your self-confidence. Did they do the wrong thing by not disclosing? Probably. By your profile, it looks like you're 22 now, so this conversation should have been had by now. But your parents seem like they were in the ball in terms of supporting you. You have every right to feel like they should have told you earlier. But many parents never seek a diagnosis, try to beat the "strangeness" out of their children, or try to pretend like there is nothing going on at all. As you think about how to approach your relationship going forward, pleases consider the fact that your parents seem to have done everything in your best interests as they understood them. So, if you are mad at them and need resolution, let that truth be the foundation.

I personally think it's very dangerous to withhold this information from a child. There is a huge risk of the child interpreting this as it being a "shameful secret". There are enough cues from the over-culutre in general that there is something WRONG with you without getting those cues of shame (whether intentional or not) by trying to hide the information. I think many times this is done in an attempt to protect the child, or maybe the child isn't old enough to understand the information and then as time moves on it feels awkward to seemingly out of the blue confess to having this knowledge and having willfully withheld it. In my own case (with my son), I initially resisted labeling him publicly because I didn't like the way labels seemed to instantly create limits and stereotypes (at school). Poorly-trained staff seem to rely on absolutes like "ASD kids can't do X, Y, and Z," and rely on simplistic explanations for behaviors, both of which close doors to meaningful conversations about appropriate supports and interventions, as least in our experience. Eventually I was pretty much forced to label him at school, though, in order to get the accommodations he needed for the time he remained in that system. I'm now uncertain as to whether it was worth it-- in some ways it did more harm than good.

At home, though, things were very different-- I tried to be transparent in the information I gave to him, modifying it as he grew, with terms he would understand. I've never hidden the information from him, only simplified the language to be appropriate to his age. At this point (at age 10) he knows everything that I know, and is an active participant in the conversation. I'm proud to say that he completely OWNS his autism (is not ashamed to say he has autism) and understands that because of his autism he has unique strengths and also challenges.

As with other commenters, I can't say why your parents in particular may have chosen to hide your diagnosis (if that's indeed what they did) but there are a lot of possibilities, and many of them could have been well-meaning, even if that backfired in the long run. I think in your position, if I were you, then for my own peace of mind I'd have a conversation-- as emotionally neutral as possible (trying not to start a fight or blame anyone)-- and basically just say something to the effect of, "This is what I've come to understand about myself, and I wanted you to know. You don't have to agree or disagree; I just wanted you to know that this is my current understanding of myself." You could leave the door open for her to volunteer anything she knows, or confess to having known, but maybe let go of an expectation for some kind of explanation. Maybe she doesn't even fully understand her behavior in concealing this. Based on how defensive she is, she probably isn't proud of it. It's okay if you tell her that you feel sad or angry about this, or that an explanation from her might help you get some sense of closure on this aspect of your relationship, but you may need to accept that she may continue to be defensive and avoidant. You could let her know that the "door" (to the conversation) is always open if she feels ready to talk about it. Good luck!

I remember some of the same things (including some kind of evaluation that my grandmother swore up and down was for the gifted and talented program at school).

I'm almost 40. They could not have known I was HFA because the diagnosis did not exist until 1994. I was sixteen.

If my grandmother HAD had a diagnosis like that in her hands, I'm sure she would have hidden it from me. Not out of some kind of bad intent or even out of be ashamed OF ME per se but simply because she was born in 1925 and grew up in a time and place where the simple fact of things like developmental disability and mental illness were considered shameful and something to be hidden (and to be frank, with things like the eugenics programs of 20th century America out there, sharing that information could very well have been actually dangerous).

She may, in fact, have been instructed not to tell (still a pretty common, if erroneous in my opinion, instruction even now). The idea behind it, I believe, is that you want to avoid the child thinking of themselves as "different," possibly on the premise that developmentally differential children in general and autistic ones in particular are not self-aware. It's horse-hockey in my opinion-- there's a difference between self-awareness and self-consciousness, and another difference entirely between those things and shame. Unless the disability is very, very profound, different children know full well that they are different. What they DON'T know, unless they are taught, is to assume that it's a Bad Thing.

Withholding that information might have been rooted in a desire to protect you, too. Or in an inability to figure out how to tell you, thus prompting a choice to simply avoid that which was difficult. It could be a lot of things other than simple denial or shame (not that those things are actually all that simple). It's probably honestly a combination of factors.

Yes, they probably should have told you. I've been up-front with my son about his ADHD diagnosis since he was six years old (sometimes against medical advice and almost always against conventional wisdom). I almost always advise people to be up-front with their kids about whatever isn't according to the standard wiring diagram in their brains...

...but I grew up around autism and mental illness. Most of my family "had something." Most of my friends "had something." Talking about things somewhat frankly was something we just had to do. A lot of the stigma and mystique and fear of those things was peeled away for me by the time I was old enough to tie my own shoes. It's not that way for a lot of parents even now, and definitely wasn't that way 10 or 15 years ago when your folks might have started telling you.

Minor nitpick: (because that is what I do)

I think we have to be careful with how we say a disability is or is not very profound. Sometimes it is a specific thing versus a general thing. I would not say that my son is profoundly autistic (in the general). His diagnosis was teetering between HFA and AS and they gave him HFA because of the severity of his splinter skills. His social skills scored in the .01 percentile (not a typo) I have no idea if he would score that low today or not, but at no time did I eve consider him profoundly autistic. I do think (to agree with your post more generally, that his lack of social awareness is very unusual even for an autistic person and it actually confuses me that he is so unaware as I always knew I was odd and I never had am official diagnosis of anything.

The other thing is whether you are encouraged to tell your child or not depends very much on time and place. I live in a pretty rural place, and believe it or not, no one ever told me not to tell him. I think the school was probably annoyed that I hadn't, if I had to guess, though no one said anything to me. I based the initial decision on his development at the time, and on the attitude of relatives. We still have not told the relatives by the way, with one exception.

I do agree that in the general case it is better to tell, but that you may have to get things figured out first so you can protect the child from the label when necessary. Of course, you have to do that with the professionals who know, too, because it is so easy for them to use it as a crutch also.

Thanks for all the replies, I eventually did bring up the issue with my mom and while it was an ordeal in the moment things have settled down for the best. First off I’d like to say that my parents did do a great job at raising me given the circumstances. I have three other siblings and while I’ve always been the odd one out of the bunch, they always tried to set to rules as fairly as possible. That and they’ve try to identify our interests at an early age and get us the support we needed to purse those interests.

Well to prepare my approach for this conversation I attempted to gather some information from my sister whose knowledgable about our family medical history since thats her career path. Almost everything came out immediately, she recalled conversations where she and my mom would discuss the very issue of autism within our family. Apparently its heavy on my grandmother’s side of the family, in particular my grandmother has AS and some of her extended family is on the spectrum. My mom told my sister that I was diagnosed at the age of four and a half with some form of autism or ADD. The specialists recommended various sensory stimulation therapies to help incite more social behaviors. Things like dragging my hands through bowels of rice would be done to stimulate speech. Apparently it worked very well and in combination with speech therapy I began to communicate a lot better, the “lazy speech” as my mom called it had been ‘fixed’. After gathering this information in conjunction with an old baby notebook which refers to my developmental milestones I felt confident enough to make my approach.

Anyways.. I talked to my mom back around the end of september last year about my diagnosis and initially she didn’t have much to say and took a very agnostic approach, then I brought up my recollection of being taken to a facility when I was younger and she changed tone very quickly. I asked what I was doing there and what they determined, she immediately denied any such event. This was a mistake as the event had been understood to be true by my sister, information I withheld from my mom in order to gauge her response. I pressed harder and she would reiterate how well she raised me and how she did everything she could, which I acknowledged calmly and agreed however the it was clear these were diverting words not constructive ones. I brought up my baby notebook and how the signs were clear that I grew up differently relative to my siblings and wondered how everything seemed to change when I was five.

Then she conceded, she did in fact take me to see some developmental specialists when I was young for the communication issues and slow development. She claims they did some tests, said they didn’t know what was wrong, but that they could recommend treatment that would help and thus began my sensory stimulation therapy. This is a crucial bit, doctors that give treatments without diagnosis are not doctors. Why my mom would tell me this story is unclear, why she would make these mistakes, how she thought it would pass by me without a second thought? Either way I firmly called it out as inconsistent and she got very mad at me as she took the accusation of lying very seriously. At this point I’m only interested in what actually happened, what had happened is long ago and beyond my grasp, so the only thing left to gain is an understanding of what happened. If she can’t give me that how am I to trust her?

Well reflecting back she sees it fit that upon doing everything she could to accommodate my condition that she ought to be granted amnesty from it being resurrected just to inject itself into our relationship. What she forgot was this condition is for life, and it is never quite dead until the body it beats in ceases. I’m still trying to figure it all out.

Either way, after that tense moment and some nasty things she said to me which released a lot of tension against me we decided to settle. She maintains that she is unaware of any diagnosis despite the facts. And I shall maintain that my only interest is of the truth, mistakes were made on all sides but that mustn’t deter us from uncovering the truth.

However since then things have been much better, I think the conversation helped break the ice over me being a bit ‘different’. Nowadays she tries a lot more to gather a clear understanding of how I communicate, especially when its more nonsensical screeches. I may have a certain way of communicating that I’m done listening to what someone has to say by screeching a bit until they stop and she’s learned that pretty quickly. Furthermore the topic of autism has come up several times since and its been a much more pleasant and productive conversation. I don’t feel strange mentioning it in passing with my siblings either and honestly ever since I brought the issue out I feel much more understood by my family. Its funny, I hear more about the strange stories of how I would act when I was younger and to me its like I’ve always been this way (maybe I’m better at toning it down now) but now they say these stories and it sorta starts to click in their heads like they’re looking at those memories with the current context and with a better understanding of my condition and its allowed them to understand those memories in a deeper way beyond “oh cyrus is just strange that way”. Its a topic I’ve never felt ashamed of, I’m only realizing it just makes Its feel weird and sometimes breaking that ice (while difficult initially) is best done in order to allow the free flow of information.

I was "officially diagnosed" at 15, but was actually diagnosed at age 8 and I just found out it was kept from me because my parents thought "it won't be a problem if we don't make it one".

The reason this makes me so angry is because A) I didn't get the help I needed and struggled in school and B) Because we never opened that box up and poked around in there, its possible now that I never had ASD and have ADHD. Either way, I didn't recieve the help I needed as a kid and keeping up in school was hell.

None of that holds any water IMO. If the child is the one with the disability, the parents should not have the right to withhold that. Parents need to stop seeing their children as playthings or objects that they possess, and start seeing them as actual people.

The logic behind what you wrote there is what has destroyed my relationship with my parents, especially my mom. No amount of therapy has made me stop resenting her, and I doubt it will at this point.

See I agree here your parents did not respond well to the diagnosis and failed to take the steps needed to get you the help you needed when it would've made the most impact on your life. It seems my parents tried to get me the treatment I needed without confronting the underlying issues. Now I'm older and am much more aware of how my body and mind works but its only because I was given the tools I needed at an early age to start functioning with others.

School definitely can be hell especially if you're not NT. For me I had behavior problems that really stemmed from me processing and communicating things differently than my peers. I didn't have many friends and the ones I did weren't the greatest of people so I tended to be a loner. Worse even is I would pick up negative/poor mannerisms from those friends because they would do things with poor intentions. Understanding how our mind works and how it differs from NTs is an important step in developing our identity in this world.

However it is a double edged sword when parents try to navigate the ASD diagnosis, many parents want whats best for their kids its just they literally have no idea how to handle ASD in their children which leads to mistakes, this is where having a more open and comfortable discussion about the topic at an early age with parents is important especially in terms of acceptance as that is the first step towards treatment. My parents tried to skip acceptance and go straight to treatment and that led to this tension that luckily was resolved through having a productive conversation about it. My mom will still maintain that I only have a "little bit" of aspergers from my grandmother's side on my mom's side but when I'm able to discuss freely how my mind really works I know she and my dad come to a closer and closer realization that this condition was not a childhood phase and that they must accept me for who I am, which they are getting better at each day especially since I'm living at home currently.

I definitely feel where you are coming from on this. I feared that the moment I had to confront my mom on this issue either our relationship was going to be over or it would improve. Fortunately I not a very resenting person and if our relationship would fail it would be due to my mom's inability to accept who I am, anyways things panned out and we are in a much better position. After breaking through conversationally on this issue we are in a less tense situation where I feel more free to discuss how my mind works and how I think about what I perceive. She truly is amazed at times, like my mind has always been this bizarre black box that was simultaneously capable of some extremely complex computations while also unable to perform basic tasks like communication.

I feel like in your case you have to accept that your mom has made mistakes and that those mistakes may have negatively affected your life but that is the past now and you can only move forward from it. Either you can abandon all hope of having a relationship with her (which is ok!) or you can build up the courage to construct a functioning relationship with her, assuming they can put in the effort to make it work. I'm of the school of thought that we are all connected and even if we delude ourselves into thinking we can disconnect from each other that still we all exist in the same room together, ignorance or not. So you can either commit yourself to never looking towards their corner of the room or you can figure out a way to make it work and rebuild that relationship that has been lost due to mistakes on each side.

If I ever resented my parents it'd be because they only ever tried to transform me into something they could understand rather than trying to understand me for who I am. They're doing better at this now, so long as I do not compromise who I am fundamentally whilst still attempt to build up the protocols needed to communicate who I am to them without devaluing myself then I feel good about the situation. At the end of the day always think, family is one thing you'd hope you can always count on through thick and thin. Without them you may lose yourself to a world that does not care either way for your well being. This goes both ways, its called empathy. So long as our bodies are disjoint there shall always be a disparity between who you are and who I am, it is through language and communication that we find out who we are as a whole. And since each entity is only clearly defined relative to all other entities in the environment then we must understand each other if we wish to truly understand ourselves.. j my philosophy on the topic of relationships.

Respect is a two-way street. When parents hide things from their children, they already don't treat their children as equal-rights human beings. That's begging for problems, because that means you cannot possibly ask your children to treat you as equal-rights human beings.

Same thing goes with self-esteem. Look at all of you here. None of you sound happy. You cannot ask people to look up to you, when you are looking down on yourself. You don't even know how offensive the words "therapy" and "disability" are. It's like the neurotypical folks have had total success brainwashing your mind and you are just so ready to hunker down and accept you are defective. Give me a break.

-----

My children are always happy, every day, with big smiles on their faces. From the day they were born I have always treated them as equal-rights fellow human beings.

Over the long weekend a few weeks ago, my wife took my children to visit their grandparents. She also was helping my 8-year old son to assemble the Lego Mindstorms robot set. Then she texted me on how it went.

My son: "Mommy, sometimes you have to act more autistic, okay?"
My wife: "What do you mean by acting more autistic?"
My son: "That is being more smart, like daddy."

Ha ha. Notice that in my son's mind he was being very reasonable. He knew my wife was *not* autistic, so he was simply requesting her to *act* more autistic.

Isn't it strange that in this whole forum I am the only person with a family that truly enjoys being autistic (and that includes my neurotypical wife)? Even more weird is, we are happy, and you guys are not.

Yeap, I did things very differently from all of you, or your parents. There is a different way of living your life.

We hang around with many local autistic families. My daughter is starting to realize that other autistic children are different from her, or her brother. She would ask me why. I can only tell her the truth: "You two are lucky, because your daddy understands you guys. Other children are not as fortunate." Yeap, autistic children are totally problem-free. They are, and always have been, perfectly fine the way they are. It's their parents and our society in general the ones that are defective. Instead of treating the truly mentally ill, we choose to treat the perfectly mentally sane. And that's the problem with our approach to autism.

I always tell my children, that they are not born to fit in, but to stand out. I tell them: "Never let anyone tell you that you need to conform."

Guys, don't let the neurotypical folks brainwash your minds.

Don't ask anybody to respect you, when you don't respect yourself.

I get what you're saying, and that's so cool!
However, I certainly will ask people to respect a person who's not hurting anyone, whether or not that person respects themselves!

My parents didn't tell me because, as BuyerBeware said, Asperger syndrome wasn't a diagnosis until 1994. I read about it in 1997 (I was 32 then) and a lot of the characteristics described me. I don't believe I would have been better off if I had known, rather than just suspected, I was different. I can't blame anyone else but myself for my lack of progress in life.