In part one of this series, we looked at how parents react when their children are labelled. In part two, we look at how the person being labelled reacts and discuss the best times for disclosure.
The Age Differential
Most people with Aspergers seem to be "born with a knowledge of their difference", though in truth this awareness develops over time, mostly during their primary school years.
The age at which the label of Asperger's or autism is used to describe these differences seems to have significant impact upon the way in which they are received by the person with the label. Of course, there are other factors too, particularly the way in which others receive the news.
The Very Young
As you would expect, telling an "under 8" year old child that they have Asperger's Syndrome or autism is pretty similar to telling them that they are wearing a blue cardigan or that they were born in Australia. Their reaction is pretty minimal.
Of course, the fact that you have now disclosed this "secret" will cause them to pay a little more attention whenever the topic is discussed in the household.
As a result, parents who have "disclosed" need to be responsible for maintaining a positive view of the condition. At age 8, it's the way that others describe the label rather than the label itself that matters.
Revealing the label to a young child and allowing them to live and grow with it is the best way to get the maximum benefit from the label while providing the greatest comfort.
The Teenage Years
We all know that teenagers are generally rebellious and angsty, they don't take criticism well and they struggle with self-image. If you attempt to fit a teenager with a label, they will either, "not want to know" or they'll take it onboard in a negative manner.
The teenage years are probably the worst time of all to press a diagnosis.
Image by Anastasia Gepp from Pixabay
When teenagers decide not to accept the diagnosis, they'll rebel not only against the label but also against any support you manage to obtain for them. They'll reject the idea of "remedial classes" or "special teachers" because they don't want to be seen by their peers as "different". There's not a lot you can do about this and they can't be reasoned with.
Worse still, is when teenagers take the label in a negative way. They can sometimes decide that the label defines their life and limitations. As a consequence, many diagnosed teenagers simply stop striving for academic or social goals.
Much as I don't favour withholding a diagnosis from a dependant, I'd be more inclined to keep things quiet if the child was already a teenager. It's still worthwhile organising special classes but it's not a good idea to the let teenager in on the reason why these classes are being arranged. If you don't tell, they'll draw their own conclusions.
Early Adulthood
Like the teenage years, early adulthood can be a dicey time to reveal a label. Young adults are struggling with a different set of social issues such as dating, tertiary education and starting work. Rebelliousness isn't as problematic at this age but depression is. Handing out a label at this point is almost like handing out an excuse to stop trying.
Many young adults on the spectrum seem to like putting "road blocks" in front of themselves. They'll talk about a problem, such as not being able to find a job or a partner. Then, when given advice, they'll find a reason why they can't use it. For example, they'll say that they can't get a job because they haven't got a suit. You'll offer to buy one, but they'll find some other excuse like "I don't look good in a suit". If you press against this logic, they'll resort to less and less sensible/logical arguements. In reality, they're depressed.
The label should really be presented when the person affected is feeling positive. Aside from study assistance, it's generally uncommon for financial assistance to be given to adults, early or otherwise.
In that sense, it doesn't really help anyone to reveal the label at this time unless it becomes critical.
Mid Adulthood and Later
By about mid-adulthood, people are settled into their ways and nothing is likely to have a great deal of negative impact on their self-confidence. They've either been successful (or unsuccessful) in life, love and work already.
It's quite common for adults to discover that they have Asperger's or autism because one of their children is labelled with the condition. That's how it happened with me. The initial reaction isn't one of shock, though a little bit of denial is common. The main reaction however seems to be relief. The label finally explains things that have occurred throughout our lives.
Adults in this situation often say that they wished that they'd known about it earlier. I know that I did. Unfortunately, the truth is that we probably wouldn't have accepted it had we known earlier. Worse still, knowledge of what we are may have changed "who" we are. It may have resulted in depression or other negative emotions.
Summary
I guess the message of this post is that the best times to reveal a label are either early childhood or mid adulthood. Anything in between increases the chance of depression or non-acceptance.
Since most adults would have preferred to know about the condition earlier in life, it follows that the best time to tell is probably around ages 5 to 10.
If the label is given both a positive spin, and a healthy dose of "indifference" (ie: telling the kids that it doesn't matter - and that it doesn't change who they are or what they can be), then the overall reactions and long term effects are positive.
In part three, we'll look at how others react when you tell them about your label.
Comments
I think it was mostly as you say, like being born in Australia. It was an interesting thing about me.
I also imbibed a sense of being Special, since I was bright and could talk well, while many of the other autistic kids I met through TEACCH could not.
When I got to middle and high school, the angstiness set in anyway. In high school, I was particularly mortified by being in special ed. I hated having an IEP, because I felt it cheapened my academic achievement, and I hadn't used it in years.
Now, as a young adult, I am depressed (but being treated for it) and I am having trouble moving forward. I did very well in college, but after a prolonged job search I could not get employment in my field. I have since been exploring other possibilities, but am still somewhat mired. I do have a lot of friends, a loving family, a great romantic relationship and a fairly clear vision of what kind of life I want --- it's just a matter of getting there from here.
My autism does not hang on me like a millstone, as it sometimes can when younger adult autistics run into difficulties. I don't consider it all that different from any other set of strengths, weaknesses and peculiarities that makes a person who they are.
Anyway, good post!
Granted, for the most part, I think you're dead on.
I am also willing to take help from the people in my life, whereas before I always insisted on doing everything myself. Asking for assistance has been very difficult, but it makes my loved ones happy to do it, so the only person that has a problem with it is me. :-)
Doing so has brought about a good deal of internal upheaval but has been hugely positive above all - it really has explained a huge amount of why I am the way I am, and why nothing and no-one else ever quite makes sense to me.
As you suggest is often the case Gavin, I too have pondered a lot on whether I would have liked to find out earlier in life. I've reached much the same conclusions.
If I'd know earlier I would have spent much less time particularly in my adult life pretending to be someone I'm not and that I never can be be - the type of person my peers manage to be with ease. I have strived for goals that are unachievable.
However, I also feel quite strongly that if I had been diagnosed as a child I may not be where I am now. I've generally succeeded in getting on in life despite it being a confusing struggle. I have a wife, two kids, a house, two cars and a job. Would I have all of those if the Asperger's label had followed me since childhood? Quite possibly not.
Asperger's kind of discovered me. I'd flirted around it about five years ago, but without thinking it applied to me. Perhaps the time wasn't right then, but last year it finally was. This time the label did stick, and it's opened up a world of acceptance and explanation to me.
James
So I went through my childhood and teenage years and early adulthood not knowing what was wrong with me. I knew I was different, but I didn't know why. My family just chose to pretend like there was nothing wrong with me. I was picked on so much by other kids, and looked at as some kind of freak. I was not given any guidance whatsoever about how to interact with other people.. how to read body language.. etc.
Because of all the research I've done, I now know I have Asperger syndrome. I'm doing pretty well now at age 37, but I always wonder.. what if I had known about this sooner?? Could I have gotten help with this?
i guess i see the label (being taught what it meant as an adult) as a big 'so what' or an explanation/justification for just understanding complex things with ease, and being an introvert. my son feels like a cripple. in a sense i am kind of happy that he has it - he will really succeed in what he puts his mind to and achieve a lot! as a mother though, it is the worst ache to watch your child go through the emotional social teenager stuff. and id like to say it gets better with age, but i see many adults in their 30s, 40s and 50s who still act like teens.
we go for tons of social therapy to aleviate some of this stress so he will succeed all around as an adult.
Although we Aspies lack social intuition, we are not without basic intuition. I know when something isn't right. I know when things aren't adding up. I know when someone isn't telling me the whole story. To keep an AS diagnosis from an Aspie, who has enough difficulty parsing the world, could mean even greater confusion, loss of self-esteem, and mistrust of other people.
I have a teenage daughter, I couldn't imagine keeping anything that important from her. She is NT, but were she to receive any diagnosis of any kind, I would share it with her in a supportive, loving way.
I guess my point isn't "don't tell", but rather; "tell as young as you can and make it a normal part of their lives".
If you only find out during the "danger years", then you probably should tell immediately. Just be ready and watching for signs of rejection and depression.
Regardless of when you tell. The how of it doesn't change. It must be painted as a positive, not a negative.
During the danger years though, I'd be very careful about who else you tell. After all, aside from teachers (who unfortunately often let the class know anyway), it should be up to the aspie to decide who can know and who shouldn't.
In particular, at dangerous ages, parents should not tell their friends or their children's friends. Even relatives have limits on what they need to be told.
how do you "deal with it better"? i am asking so i can share this with my son, age 14.
i think my son has a hard time with it because A. he already feels different and B. now a label is proof that he is different and C. is very worrisome that he will never 'fit in'.
Your son feels this way probably because he is insecure, the best thing you can do is treat it like a good thing, and make him see the good side of being aspie. Yes, a lable is proof that he is different, but different isn't bad. He probably wants to fit in because he doesn't know anyone like him, anyone who thinks the same way (thats not related to him, and is around the same age range) Having Mom understand you is one thing, but other people, its different... probably becasue mom tends to be biast... and he probably wants to fit in because he feels alone, and apart from others. I was the same way, I hated being abused at school and everywhere else. when I found I hade aspergers, I tried to find friends that I could relate to, that also had aspergers, I found my present boyfriend, and together, we have worked out our differences, and understand eachother. If I were you, I would try to get him friends that also had aspergers, (preferably ones that could deal with it and would have a positive impact on him) Its good to have friends that are both NT and aspie. but having aspie friends will definately boost his confidence, which it seems like he needs a lot more of it than he has...
If you want, (and this is just a suggestion, you don't have to go through if you are not comfortable) I could give you my email address and phone number and he could email me or call and chat, and I could also introduce him to my boyfriend, who is a real sweetheart. Looks like your son needs to talk with someone who is not related to him, and also has aspergers and is in sort of the same age range. It would really help his confidence if he got to be friends with other aspies.
and how I "deal with it better" is basically when I found I had aspergers, I found friends who are aspies, and they helped me boost my self confidence. He is different, but he needs to see the difference as a good thing, not a bad lable that makes him somehow worse than others. Being aspie is no excuse to do badly in school. Infact, its a good reason to to better in school. It is definately not a stopper in life, Aspergers opens up new doors in life to all kinds of possibilities.
With this list, I began the start of my journey to finally be able to become more social, as it has been one of the few things that has ever and continues to ever make me truly happy on the inside. But if I never knew I had Aspergers, I would have never created such a list, and without a list of things that are wrong about me, there's nothing I can do to improve.
I doubt I'm the only one like that, and I almost felt a sense of betrayal once I found out my mom didn't tell me. She even told my brother!
Point still being, hiding Aspergers, regardless of age, does not seem like a good idea to me.
So, is the label an excuse? not really, its a tag, an assigned value.
Does it help? it explains an awful lot.
Am I special? no. I am me.
So as an adult (34), I have attained a strong sense of self but the social "rules of engagement" still baffle me.
As for when to tell somone, thats a personal choice and the observer needs to assess the person as to how strong their character is otherwuse they may use it an an excuse and not fully appreciate themselves. I'm leaning more to the older years when we get a "feel" for what is "not quite right" and we have a chance to develop our intrinsic character without being special. We're normal people that just see the world a little different. I am a practicing civil engineer that has also practiced in the realms of structural engineering, drainage engineering, floodplain management, construction engineering, highway design, traffic engineering and now subdivision design and assessment.
Guys yer all on the right track. go with your instincts.
a. Obviously benefited from being told. (or could have benefited).
b. Showed Negative symptoms and overcame them.
It's pretty clear that you shouldn't withhold a diagnosis from your aspie. Sure, there may be negative effects at some ages but as a parent, you need to deal with them.
I've just started on the Asperger's journey and began a blog about being a mom and wife to aspies. I linked to your blog because I find your posts so helpful. Thanks for sharing your thoughts!
however...i did read a lot of adult accounts at the time; the vast majority of people seemed to be relieved. like, "whew, that explains a lot". my reaction was definitely in the minority, which is a good thing.
J
I think I would have greatly benefited from knowing earlier. If my parents had known, I probably could have gotten treatment and counseling and might have avoided being homeless in my youth.
I think honesty is a better policy than lying, even by omission. I don't think knowing about an Asperger's diagnosis causes the depression or angst or such things - I think having Asperger's Syndrome does. I had all the feelings of isolation and otherness and depression without knowing what I had. The only thing I knew was that I was some kind of freak. I think it would have been good to know that I had a syndrome, an illness of sorts rather to just have a peer and self created label of freak.
Since getting diagnosed, I've felt so much better about myself. I've always felt bad that I was a freak, a weirdo, a nerd but finding out it was AS puts it into perspective. It's like having diabetes - I wouldn't hate myself for having diabetes if I did.
Several years ago, I was talking to someone who works with Autistic children. In the middle of our conversation, he asked me if I am Autistic. That really caught me by surprise.
Lately I have been reading more about it and a great many of the descriptions of people with Asperger's or Autism describe me quite accurately.
Another thing I really identified with was the main male actor in the movie Mozart and the Whale, especially when he was ready to go out on Halloween and just couldn't leave his apartment.
Every Sunday I make definite plans to go to church, but can't force myself to go. The same goes for funerals of non-family members.
Every July there is a major barbecue cookoff and fundraising party on a friend's ranch. Every year I have every intention to go. On several occasions I got in my car and drove out that way but turned around and came back about half way to the ranch.
Only once have I ever actually made it to the annual cookoff. I managed to stay about two hours before I felt an enormous compulsion to leave. In comparison, my younger brother goes to the ranch about three days early and returns the afternoon after the cookoff.
Until recently, I really had no clue why I had so much trouble to convince myself to go to such events and usually missed them. I just don't want to have to deal with everyone, especially since the main effect is usually to reinforce in their mind that I'm very different than them even if I did grow up with most of the people there.
Identifying what you're dealing with is always the first step in treatment. How can you know how to approach it if you don't know what "it" is????
And like any thing else in life (finding out you're adopted, your dad isn't really your dad, whatever), even finding out in adulthood may ANSWER unspoken subconscious questions you've always had.
For the life of me, I can't imagine why you'd be AGAINST anyone getting a diagnosis, or seeking one, but I'm eternally grateful you're not a doctor!
My 15 year old grandson just got diagnosed, after many years of having Kaiser tell us "it's nothing, there's nothing wrong with him." He had to have a major depressive episode and be put on a 72 hour hold in order to get care and to finally find out what was really wrong with him. At last NOW we know, and can find ways to help him. And for him, it's better he knows it's not that he's "stupid", it's that we need to find a different way for him to learn.
Again...so glad you're not a doctor. I skim the comments and all I see are people singing your praises. Seriously....WTF?
I'm not sure what exactly you've been reading but I'm well and truly in favour of diagnosis and labels.
This whole post was about WHEN the best time to discuss the label with your child is - and my general answer was; as early as possible, before it matters.
A Diagnosis and Label is a very important starting point for self-understanding.
They become less important as you get older though and if you haven't got one by the time you're over 18, you've missed the important years where it can make a real difference.
By the time you're middle aged, you know who you are and although a label (even a self-applied one) can help you understand yourself better, a formal diagnosis doesn't offer as much benefit (particularly when offset against the cost).
The one thing that you need to keep in mind about labels is that they're generalisations. Everyone is different. A label can be a great guideline but it never 100% covers a child's capabilities.
That's why they say, "If you've met one child with autism, you've met ONE child with autism."
A diagnosis that I felt, upon hearing it, immense relief and guilt. Relief that my brother's struggles had a root, a cause that could be mitigated. Guilt that I have been so angry at him for so many years. Angry for not respecting my parents and eroding their relationship. Isn't my brother entitled to the same sense of relief? Who are we to make that decision for him? The name will not define his entire being but I imagine it would serve to provide some additional information for self-understanding and compassion. I imagine he has been confused and depressed all these years because he continued to fail again and again for no obvious reason. I want him to feel some relief in knowing his differences come from a group of traits that he was born with.
I understand that reasonable professionals do indeed disagree about whether to withhold a diagnosis from a child with Asperger Syndrome--there is no confusion, however, regarding the moral and legal obligation to inform an adult of a medical diagnosis.
Should I tell him myself?
Absolutely No reason why he should not know his diagnosis -- and in fact I think it may be "illegal" for his mother to know and him not to know.
Think of the Ugly Duckling story.
The duckling knew he was different and was sad living his life out as a duck. He was so happy to discover that he wasn't a duck but a swan. There were others like him.
You can't deny your brother the opportunity to find like-minded friends.
When I read about the condition lightbulbs went on. This was me.. But I never really did anything about it. After all, my life was pretty ok. I had a job and some friends, and was able to care for myself.
It was this year, 2015, after getting a severe burnout and thinking I was going to die.. I was sent to a psychologist for my anxiety issues.
Last week, at age 34, I got the official diagnosis. My reaction was a mixed bag of emotions. I wasn't really surprised, but was a bit shocked how far it reached. It defines me in so many ways, more than I expected or would have accepted in the past.
Because I wasn't convinced earlier in life. I did pretty well, even have a stable relationship. I was doing too well and fitted right with other people, even strangers.
But I did have lots of anxiety issues and was tired a lot of the time. Always wanting to know everything beforehand and not liking surprises.
I now know I am mimicking NT behaviour all the time which wears me out.
And a lot of my anxiety fits right in with Aspergers. New situations, fear of change, my love for routines, but even my fear of diseases which has to do with sensory processing (misinterpreting body signals, not really knowing whether I'm hungry or feeling sick to my stomach, stuff like that).
Anyways.. A week later I'm accepting it a lot more.
I advise Anonymous and any others who find themselves questioning whether or not to reveal a patient's diagnosis, to write a letter to that person. Make sure to remain positive and reinforce your love and support for them, your relief (& if applicable, Guilt) and <<>> MAKE SURE YOU EXPLAIN *****WHY*****. That is the most common Aspie question.
"WHY?" Questions to Keep In Mind
•Why they were diagnosed with Aspergers (maybe use an example of something from childhood that isn't emotionally upsetting... Clumsiness comes to mind, Sound sensitivities, Picky Food Habits, Obsessive Compulsive Tendencies, Research & Knowledge Retaination, Strong Long-Term Memory, Inability to remember someone's name or even if you have met someone before, Emotional Episodes (Meltdowns))
•Why are you writing the letter (Answer: Because you have spoken with your mother and she revealed the diagnosis and her plans to keep him in the dark, Knowledge of the diagnosis give him power over his life (coping skills, abilities, difficulties to work on, accomodations, and different treatments)
•Why do you care about them knowing
•Why do you care about them
•Why didn't you mention anything sooner
•Why are you writing a letter instead of talking about it (Answer: Because Aspies tend to process better through written word. We have trouble processing, interpreting and responding during a conversation. Honestly, if someone were to come to me with something like this, I would have so many questions in my head that I wouldn't able to process that the person was answering my questions as I thought them).
•Why didn't the doctor say anything
-•- "The doctor they're working with told her that it's just a label and it will make him feel like a failure." -•-
Personally, this raises a big ol' RED FLAG for me. I would consider suggesting to your brother that he may want to seek a second opinion, and to consider changing doctors. Idk the doctor or the circumstance, so he may be founded in his belief (if your brother suffers from severe depression and Suicidal tendencies, the doctor's opinion is quite sound). However, the way I am interpreting this is as a doctor who doesn't want to put the effort in to treating Young Adult Aspie. We are difficult to treat, because we have an adolecent level of judgement with adult rights about Real-Life issues, our personalities are fairly set, and so are our habits. Try to approach treatment coping ideas as "skills to learn" instead of "habits to break".
Above all, be willing to learn along-side him and support him. If he is already suffering from depression, and you tell him about "His Problem" without helping him with it, it could be the straw that breaks the camel's back. Remember, he has been accommodating EVRYONE ELSE his entire life thus far, be willing to accommodate him a little bit. For example, there are some things about Aspies which are very good habits to have.
Reply if you still need more of my ramblings. Lol