What happens to an Aspies if they aren't diagnosed?

[GrammyLoves]

I have been convinced for years that my granddaughter has Aspies but her mother refuses to acknowledge it or even allow the word to be said. The little girl's life is getting more and more miserable because the main person in her life makes demands on her that she can't seem to fulfill. This is causing her severe self-esteem problems and making her traits even more pronounced. She is one miserable kid. Her mother and older sister are short-tempered with her and demanding that she do what she can't force herself to do.

Our other family members and I have read and educated ourselves about the subject and this kid is everything, every symptom and more, but we are not allowed to make allowances and be tolerant of her quirks. That would be "spoiling her".

For years she couldn't learn her multiplication facts. We worked and worked with flashcards and she just couldn't get the simplest ones. One day I talked to a friend who's a special ed teacher and asked her how do I get through to her about this times table thing. She said, "Put the answers on the cards. She learns by memorizing." I did that. She learned them all in ONE TIME THROUGH! She is a brilliant child, but all she needs is to be treated with respect instead of demands and bullying.

She knows she's different and it makes her think she is "less" than everyone else. She withdraws into fetal position and clings to my arm because I am the only one who understands what is going on with her. I long to explain to her, but her mother refuses to allow this "excuse for her weirdness. She has to learn to not be weird." She has refused to get her tested and calls her "spirited" and "weird" and "stubborn", but will not listen to me or the girl herself, who is afraid of disappointing her mother anyway and getting yelled at. I won't list all her symptoms, but if it's on the list, she has it.

I fear her extreme depression and misery is going to eventually lead to something very dark and awful. I am so concerned about her emotional well-being. There is nothing I can do and am wondering what others who have this issue can tell me about how it feels when important people in your life do not respect your issues and don't realize how intense and uncontrollable they are! What would it do to you if, year after year, you were forced to do things (by yelling and verbal abuse) that you just can't handle? I know there are different, patient, loving ways to help an Aspies work through difficult things...and she's not getting that. What is this going to do to her as she turns into a teen?

Thanks,

GrammyLoves

 

[Aspieistj]

I wonder if Child Protective Services would be willing to step in. Also, have you talked to the child's pediatrician and teachers?

 

[Judge]

I fear her extreme depression and misery is going to eventually lead to something very dark and awful. I am so concerned about her emotional well-being. There is nothing I can do and am wondering what others who have this issue can tell me about how it feels when important people in your life do not respect your issues and don't realize how intense and uncontrollable they are! What would it do to you if, year after year, you were forced to do things (by yelling and verbal abuse) that you just can't handle? I know there are different, patient, loving ways to help an Aspies work through difficult things...and she's not getting that. What is this going to do to her as she turns into a teen?

Hi GrammyLoves, and welcome to AC. A shoutout to loving grandmothers everywhere. I miss mine very much.

Honestly, I think you already know the answer to your question.

From my perspective, self-awareness of one's autism is the most important "tool" we'll ever have to get along in this world. But we can't use it if we don't have it. I only stumbled onto my own autism only last year...and am old enough to be a grandfather. In terms of real functionality it's too late for me. I have a certain degree of "closure" to explain who and what I am, but there's little I can do now to significantly improve my life to avoid so much struggle and frustration. But for the youngsters out there, they have a chance to change their lives and curtail so much hurt and hardship. But it can only start through self-awareness.

I can tell from your post you clearly understand what is at stake here. This isn't one of those subjects to debate "the evils of the nanny-state" if that's her parents' underlying concern. Nor should it be seen as a failure on the part of any parent's ego. It's devastating to think of such things that keep a child from getting the help they really need. This is not something a child grows out of. It's a permanent neurological state where it's paramount to learn that one is different- but not deficient. Parents MUST understand this.

All that said, "How did I make it this far ?" I honestly don't know. These days I live one day at a time, in relative isolation. I don't think I have too much time left, not that it is a bad thing under the circumstances given clinical depression and OCD comorbid to my formally undiagnosed ASD.

 

[GrammyLoves]

I wonder if Child Protective Services would be willing to step in. Also, have you talked to the child's pediatrician and teachers?

Nope, I'm not allowed to discuss this with anyone and I'd never contact CPS because she could forbid me from seeing the child at all. I figure at least I'm here to try to help her when I can. Since my hands are tied, I just want to know what to watch for in the future. At least right now i have access to her to be able to try to counter the negativity she gets.

 

[Judge]

At least right now i have access to her to be able to try to counter the negativity she gets.

Don't sell yourself short there. You ARE contributing to her self-awareness. Even if in very small doses.

"Better to light one candle than curse the darkness."

 

[GrammyLoves]

Thank you so much for your reply. I feel a lot of compassion for your situation. I will keep doing the best I can with the hand I have been dealt and encourage my granddaughter to do the same. Three autism moms have told me the same thing, that the kid knowing they have something that has a real name, is about the best thing you can do for them. One of these days when she's older and out from under the hand that controls us, I will show her the information and explain what I've thought for a long time. This baby was lining up spoons on her high chair tray before she was a year old! I wish you the best; there are people out here who understand and care!

 

[Rudy Schmidt]

I'm really sorry that I can't offer any useful advice, but I will say thank you for being the one who really understands her. What you're doing, even under the difficult circumstances, is really important. I promise you, you're making a huge difference. Having one person who understands you is infinitely more helpful than having nobody who understands you.

 

[Ereth]

While my symptoms have never been as severe as your granddaughter's, I understand her struggle. I was only diagnosed a few years ago as an adult, and it was a shock to my family---who always knew I was socially awkward, but never thought it was beyond normal childhood and teenage angst. My father initially believed my high intelligence should inherently make the ASD less of a problem, but his lack of understanding came from a generation gap more than anything else. I am very lucky to have family members who have made great strides in trying to understand how my ASD works.

I'm so glad you're determined to do what's best for your grandchild, even if her parents are too blinded by their own egos to see what she needs. Do keep in touch with her teachers (and possibly also the school guidance counselor).

 

[Nitro]

Welcome to the AC forum

You will find many friendly,helpful people here who have traveled the Aspie Highway.

It seems like you already understand the child's needs but have met up with a roadblock.

I can offer no help beyond what you have been handed already,but could offer advice from my personal experience with the spectrum. This developmental disorder is not always a curse,but often a gifted child is born into autism but will face challenges trying to be "normal". My best advice is to nurture her interests and attempt to show her how to live in the misunderstanding part of the world from her side and theirs. Many spectrum people become the real thinkers and the ones who really offer great things to the world. She could well be one of them and it appears that you may be the one who gives her a great start.

On behalf of my peers here,we all hope you can be the one to do it

 

[Loomis]

Almost without exception us older aspies went through life without a diagnosis knowing we were different but completely in the dark why. We all took different roads because aspies are so diverse. I was lucky because conventional school learning was easy for me. I had a lot of problems socially but I acquired marketable skills and had a fairly normal life except for the persistent issues with socializing and communication.

Your granddaughter may be stuck now but when she becomes a legal adult you may be able to get her the help you cannot get for her now. If I had known I was aspie when I was young and had access to cognitive behavioral therapy with a high quality professional I believe I would have had an easier time achieving life goals.

 

[Peace]

She will be much better off if she understands why she is different. Maybe her school counselor can suggest she get tested.
Anyways, the single best thing that she can have, is someone who loves her and accepts her, no matter what.

 

[gregmcph]

Even if you don't apply a Name to her nature, surely it's a simple as understanding "This is what she is like. Stop forcing her to act in a way that is not what she is."
Just accept that if she is shy and quiet, well, that's what she is. If she doesn't like crowds, don't force her into them to the point of making her miserable.
It doesn't need a Name. It needs a bit of acceptance of who she is.

 

[Rachel Roth]

Nope, I'm not allowed to discuss this with anyone and I'd never contact CPS because she could forbid me from seeing the child at all. I figure at least I'm here to try to help her when I can. Since my hands are tied, I just want to know what to watch for in the future. At least right now i have access to her to be able to try to counter the negativity she gets.

Being able to counter the negativity is a very, very big deal. I'm not AS, but I do have Spina Bifida-I use a wheelchair to get around, as well as a number of other things that make my life a bit different than the supposed 'norm'.

My mother was a great mother to small children, but as I got to be a bit older she began working nights, smoking marijuanna, and basically very much not being there. My own grandmother was the one that stepped in, brought me fast food for dinner many nights, stuck up for me in school when I was too young to do it for myself...and was someone I could talk to. She taught me a lot things too, most important of which was that I'm no different than anybody else on the inside, I can do anything I put my mind to, and those that think differently aren't worth the waste of time.

Keep your chin up--your granddaughter is not alone. She has you--I know that's a big responsibility, but when she's older it might turn out to have made all the difference in the world.

~Rachel

 

[BassBus]

I am left wondering if the child's mother recognises some of the same traits in herself. After all autism does run in families. How does the mother behave? That could be asked about the father as well. In recognising these traits in your grand daughter are you feeling that empthy from personal experience?

 

[GrammyLoves]

I am left wondering if the child's mother recognises some of the same traits in herself. After all autism does run in families. How does the mother behave? That could be asked about the father as well. In recognising these traits in your grand daughter are you feeling that empthy from personal experience?

I have long suspected her father as having traits. He is very eccentric and genius. And does similar stimming techniques, come to think of it. I have been a major caretaker for her for most of her life which has bonded us deeply. Thank you for pointing out the inheritance factor. It makes sense.

 

[Ylva]

I would have suggested communication techniques like active listening or I-messages, or to ask the mother what her problem is with her daughter being "weird"... but based on what you've said so far, that might not help. So here's what I did.

When I was fourteen, I taught myself meditation. I learned to focus and gradually became indifferent to all the harassment and bullying from my parents and siblings and teachers and fellow students. The price was the ability to ignore things like overload and danger instincts; I started staying home from school and never leaving bed until my mother caught on and moved me to a different school.

As to your question, what did growing up not knowing do to me... Well, I have PTSD symptoms, I sleep so poorly I hardly bother anymore, I hate my parents whenever I have flashbacks (so I try not to when I'm around them), and I feel so unmotivated and indifferent on a near-permanent basis that I suspect I'm depressed.

 

[Sparky77]

Firstly I have not been diagnosed with Aspergers but next week I am seeing a professional to diagnose me. My childhood and teenage life was awful, I had a step dad who never liked me and branded me awkward and said I was just attention seeking, he use to refer to me as 'it', not 'her'. When I was 11 one of my teachers tried to refer me to a child psychologist for having difficulties but my mother and step dad would not have it.I never got on very well with the other children at school, they bullied me and called me weird, since leaving school at lot of them said they just called me weird because I did not talk. My teachers thought I was stupid and stuck me in with the learning difficulties but when I got to age 12 in my exams I beat half the kids in the top group despite not covering all of the work and they all looked at me puzzled and could not believe it. Later on one teacher asked the whole class who got the highest mark in the class and they went over everyone's names and some twice and still did not guess it was me, despite many of them spending 3 times as long on it. I started to hate people and I still do not like people very much, I sometimes wish I could live on an island and not bother with people. But when I was 13 I joined a drama group which did help a little with my confidence but I often use to play eccentric roles, it was easier pretending to be someone else. When I was at school I use to sit on a bench on my own away from everyone, I was never good at sports. I think this problem of mine as ruined my life, I had no confidence when I left school even to try to apply for a job, it was only after I was yelled at every day that I got enough courage to apply for a job in a pub glass collecting but it turned out the boss fancied me and I did not have that much communication with people as I was only collecting glasses and everyone was too drunk and having a good time. After this I had about 40 jobs in 5 years and dropped out of college. I now have a part time job and trained in another but I do not have any social life outside of work, some people like me at work, one guys says I am non judgemental.

 

[etbe]

In regard to your title question, not being diagnosed isn't necessarily a problem. The vast majority of Aspies who were born before 1990 had no chance to be diagnosed as a child and it didn't work out badly for everyone. People can be treated well or badly regardless of whether they are diagnosed.

Regarding your granddaughter, how old is she? If she's almost 15 then it might be easiest for her to try and stick it out until she's 16 and then move in with you. I don't know the law where you are, but in Australia a 16yo can legally live wherever they like and their parents can't do anything about it. Also in Australia police won't be interested in dealing with a 15yo who leaves their parents and seems safe where they are.

I know of a case where a 15yo girl was being treated badly by her parents and she moved in with her 17yo boyfriend and his 30yo sister. The girl's parents called every police station in the area (cops from 3 stations phoned the girl) but none of them would do anything. As the girl was 3 months from her 16th birthday the police said there was no point in forcibly taking her home (or more likely foster care) for such a short time.

If your granddaughter is much younger then maybe get a teacher to call CPS so you don't get the blame. Most places have mandatory reporting laws for teachers who learn of child abuse, if so you can encourage the girl to tell her teachers about her problems.

 

[2aspirin]

I have been convinced for years that my granddaughter has Aspies but her mother refuses to acknowledge it or even allow the word to be said. The little girl's life is getting more and more miserable because the main person in her life makes demands on her that she can't seem to fulfill. This is causing her severe self-esteem problems and making her traits even more pronounced. She is one miserable kid. Her mother and older sister are short-tempered with her and demanding that she do what she can't force herself to do.

Our other family members and I have read and educated ourselves about the subject and this kid is everything, every symptom and more, but we are not allowed to make allowances and be tolerant of her quirks. That would be "spoiling her".

For years she couldn't learn her multiplication facts. We worked and worked with flashcards and she just couldn't get the simplest ones. One day I talked to a friend who's a special ed teacher and asked her how do I get through to her about this times table thing. She said, "Put the answers on the cards. She learns by memorizing." I did that. She learned them all in ONE TIME THROUGH! She is a brilliant child, but all she needs is to be treated with respect instead of demands and bullying.

She knows she's different and it makes her think she is "less" than everyone else. She withdraws into fetal position and clings to my arm because I am the only one who understands what is going on with her. I long to explain to her, but her mother refuses to allow this "excuse for her weirdness. She has to learn to not be weird." She has refused to get her tested and calls her "spirited" and "weird" and "stubborn", but will not listen to me or the girl herself, who is afraid of disappointing her mother anyway and getting yelled at. I won't list all her symptoms, but if it's on the list, she has it.

I fear her extreme depression and misery is going to eventually lead to something very dark and awful. I am so concerned about her emotional well-being. There is nothing I can do and am wondering what others who have this issue can tell me about how it feels when important people in your life do not respect your issues and don't realize how intense and uncontrollable they are! What would it do to you if, year after year, you were forced to do things (by yelling and verbal abuse) that you just can't handle? I know there are different, patient, loving ways to help an Aspies work through difficult things...and she's not getting that. What is this going to do to her as she turns into a teen?

Thanks,

GrammyLoves

The mom is in denial and is making this about herself, it sounds. And is abusive. Maybe a way to acceptance could be if she understands that this child WILL find out. It might be in a hospital and attention may turn to parental neglect of such an obvious aspie state. Or it might be when the girl is over 18 and out of parental control. In the meantime, trying to make a child something she is not is quite the narcissistic project mom has taken on. The whole thing is quite sad indeed. One way or another, the child will find out and will likely be angry that mom kept all help away and (even worse) chose abusiveness instead. Why does this mother want to guarantee that hate and schism later? Disconnection and shaking off all responsibility later on might be guaranteed. Maybe that is what she is trying to achieve. It sounds like the child really needs a different parent.

 

[clg114]

I was not diagnosed until I was 62 years old. I do not know if anything would have been different for me. I do believe that if people are diagnosed at a young age, that they can receive consoling. This can help them deal with their weaknesses and take advantage of their considerable strengths.