Do I tell my child ?
19 Feb 2019, 10:17 am
Your daughter is special and is doing a great job in so many things as your post makes clear. My opinion is that it is very important that you tell her. The reason is that you need to be honest about her and her capabilities and you need to leave her with the impression that she is special and has lots of talents many of which likely come from her Autism. If you leave it to her to find out about Autism from books/online/teachers/friends, there is a chance that this could lead her to have a negative opinion of herself and see it as a disability and that would be unfortunate and also clearly not true.
07 Jun 2019, 8:26 am
My daughter was diagnosed with autism at 2. She is now 11. She went through several years of intensive therapy which made a world of difference.
She started PreK at 3 and for kindergarten went into regular classes with just a little help needed (504 plan). By the time she started 3rd grade the teachers thought she no longer needed any assistance and her doctor agreed. So we took away the 504 plan with the agreement if we saw any problems we would put it back in place.
She not only did not need the assistance she excelled in almost everything academic. She’s now in 5th and is all As and they are even talking about putting her in accelerated classes next year (charter school so transition from elementary to middle is within the same school)
Now all this is academic. socially.. She is friendly and sweet and doesn’t seem to have too many problems... despite being a bit awkward at times... but I was as well (and kind of still am). No one seems to think much of it.
There are other issues that are not very obvious but I know are most likely spectrum related. But no one just knowing her out and about would ever see her as anything except possibly a bit “quirky”. OCD like behaviors but not extreme.
I’m extremely grateful she is doing as well as she is. I like it that she seems to fit in well and loves school. We never hid her diagnosis but since it hasn’t really played into her life much lately we haven’t discussed it. She knows she needed help when she was younger but the word autism hasn’t been discussed since she’s been old enough to understand it.
So my husband and I have been discussing when to discuss her diagnosis. My husband doesn’t think we even need to mention it anytime soon. I however realize she will start getting more self conscious in the next few years and I think it may be good for her to know. To have it open and to where she can discuss it if she needs. And tell me if she thinks she needs help in any way.
Then last night my husband and I were watching tv. She walked in and watched for a minute and someone mentioned someone having autism on the tv. She then immediately asked “What is autism?” My husband and I looked at each other for just a few seconds trying to decide exactly what to say. However instead of waiting for an answer she then said “Alexa, what is autism?” Something she regularly does when she doesn’t know a word. It gave her the textbook definition. She said ok. And walked out of the room back to her homework.
I don’t want her to make her feel different but I want her to be able to understand herself.
Does anyone have any opinions/advice on how we should proceed ?
Thanks
In terms of my own experience, I was around that age when my parents told me about my diagnosis. Initially, I didn't think much about the technical aspects of it. I mainly saw it a way of illuminating how I was different from others. Which I took as a positive, since I was confident in who I was, and it was mainly described to me as how I was different, and not as something negative . Now, as I got into my teens, I became more reflective on my condition, and began looking for more information about autism. Which included looking into Wrong Planet, and various other sources of information. I thought over information and engaged in self reflection. Thinking about both what I considered the benefits of me being autistic (which I saw as including things such as the capacity for intense interest, a propensity for logical thinking, independent mindedness, et cetera), and the challenges I faced in relation to being autistic (which for me included things such as some difficulties in social interaction, and some sensory sensitivities). i also thought over what I wanted to achieve in live, considered how my personal strengths could help with seeking those goals, considered what personal challenges could face, and thought up and worked on ways to build on my strengths and navagate challanges. In highschool I did well academically, but socially was rather reclusive. In college I continued to develop myself acadamically and worked on pusuing a career as a historian. Through the college history club and other activities I further developed my social skills. My awareness of my autism, in part helped me to understand things and navigate my life.
I am also reminded of a particular instance. When I was in high school, my mother, a therapist at my high school, and I went to a presentation by William Stillman, called Demystifying Autism. Part of it included mentions of sensory differences in Autism, which I hadn't heard of before., It helped my to understand why certain forms of physical contact caused my significant physical discomfort, and allowed me to better navigate such issues.
So, from my own experience, I would like that it may be useful to let her know, and that it could end providing some understanding that could be useful for her in navigating life. Perhaps a good way to approach would be to emphasize it as a way of understanding aspects of oneself, that being different is ok (there's all sorts of variation among humanity), each person has their own strengths and challanges, and while being autistic may involve some challenges it also can help contribute to owns personal strengths.
07 Jun 2019, 8:57 am
I am 47 and I have not been assessed yet. If I have it (I do not know if I have mild traits of it or am on the spectrum), it will explain things and it would have saved me many years of trying to trace mystery energy loss issues which I now believe to be partial shutdowns. It would have saved me sooo much issues over the years. The number of frustrations of trying yet again to trace the cause unsuccesfully and the number of blood tests to trace it unsuccessfully because i have difficulty describing what it is, and I didn't know I often have stress but never knew it was stress... So when a doctor asked me if I was stressed I would say no...
All the issues I have had over the years only fit if I am found to be on the spectrum. Without this nothing else makes sense!
Hence why I eventually asked for an assessment and I am now on the waiting list to be assessed.
Why say this? Because I would hate to go through my life again with no explantion of what it is... I hate blood tests. I don't like the crowded hospital waiting room. I don't like walking through the corridors... It would all make perfect sense! I dread a result for the assessment that I am not on the spectrum because I feel that the discovery that I believe that I have found the answer after all these years... Just the discovery of something which fits the symptoms is such a release of emotional pressure... So if I am told it isn't that I will habe all this pressure back onto me and I hate the pressure of not knowing! Having something wrong that I can't explain and that others think I am faking it when my body goes into energy loss and I need to lie down to recover..
Just the knowing about it to make sense of things will bring such a release!
I hope this helps. Sorry I have put lots repeating. And yes, I am slightly above average intelligence, and either did very well in school exams or not well at all... Yes, some of which was down to bullying because ai was different. In collage I failed because I had a whole class against me and I found I just let go of any want to pass the exams. I just didn't care as my thoughts were more about trying to get away without being grabbed by my classmates. Looking back they were all messing about and I forgive them, but at the time I thought they were serious.
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