difficult child's autism. What should I tell him

Discussion in 'General Parenting' started by Californiablonde, Jun 6, 2012.

  1. Californiablonde

    Californiablonde Well-Known Member

    So difficult child 2 finally qualified for the IEP under autistic spectrum traits. Next year he will be getting school counseling, attending a social skills group, and having an RSP teacher help him with his work. So far I have not discussed his autistic diagnosis with him yet. When psychiatrist first diagnosed him with it, difficult child 2 was playing games on my phone and not really paying attention to what we were saying. Now that he will be getting all these special services I'm sure he is going to be wondering why. He doesn't even know that I attended an IEP meeting for him last week. He doesn't have a clue as to what it means. So my question is, do I finally tell him he has asperger's and if so, how do I explain it? I don't know if it's even necessary to tell him anything at this point, but sooner or later he needs to know. Should I wait until he starts asking questions, or should I tell him now?
  2. Ktllc

    Ktllc New Member

    If it were me, I would start talking about the services he will be getting next year. And see where the conversation takes you, how he reacts, what are his questions, etc... You don't have to have this conversation all in one time.
    With V who is a lot younger, I don't use diagnosis. But he does ask me why he needs therapy. So when he asks, I reminds him of what is hard for him and how the therapists are helping him (ie: speech therapy to help him find the words, Occupational Therapist (OT) to help him put his shirt the right way and not be afraid on the swing, etc...).
    Basically, start with what HE thinks is hard.
  3. Marguerite

    Marguerite Active Member

    Tell him, but in a positive way.

    We were told, when difficult child 3 was diagnosed, that we must tell him as soon as he was able to understand. Delaying only increases the risk of stigmatisation.

    So, what we did - we noted difficult child 3's strengths (an intense focus on letters and numbers; brilliant musically and with computers) and used those as an example in a social story. difficult child 3 was 8 when we felt he could finally understand.

    Here's what I said (I am recreating this, I can't find my original, it is somewhere on my computer though).

    "My name is [difficult child 3]. I have autism. This does not mean I am stupid, it just means that my brain learns a different way. I might need help with some things, such as knowing how to understand what someone is not saying. Other people understand this sort of thing but it is more difficult for me. I will learn it, but I need to find my own way to do so because my brain works differently.
    If I type up a piece of text on a Mac and print it out, then type up exactly the same words using the same formatting on a easy child and print it out, nobody can tell when they read the printed page whether the document was written on a easy child or a Mac. The two are identical. But the instructions to each computer that programs it to do the job - those instructions are very different. Mac instructions work best on a Mac, easy child instructions are designed to work on a easy child. If you tried to swap the programs over they would either work badly, or not at all. It is always best to use the correct software and operating system for the purpose and for the matching computer.
    Some people have Mac brains and some people have easy child brains. We need to each find the best way we can learn, so we can learn how to be the best we can be."

    Yes, at 8 years old difficult child 3 understood this. And by putting it in writing in the 1st person, he was able to repeat it to explain it to others.

    We also organised a Sixth Sense program for his class at school. Normally the child who is the subject of this, is not present. But we let difficult child 3 stay because we wanted him to get a good feel for what autism is. When we did the Q & A session, we kept him out then so the other kids could feel free to ask the awkward questions. The very first question was, "Is difficult child 3 retarded?" which began to bring an angry reaction from the teacher, but I allowed the question because kids hear these words at home and want to understand.

    We raised our kids to value themselves, and included in that is valuing how they are made, autism and all. When difficult child 3's scripture teacher prayed with him for his autism to be healed, I got angry with her (although she was just misguided). Faith is a tricky area with autism, because they take everything at face value. If you promise something, you had better be able to deliver. And to pray for healing of the autism, was to signal to difficult child 3 that his autism is a bad thing, it is something to be wished away. And when it fails to be wished away? Who has to deal with that crud then, hm? This should be in the primer about how to sabotage a kid's faith in God, humanity and himself, all in one fell swoop. Especially with autistic kids, God should not be presented as a magic wishing fairy. That's not what prayer is for (check the pro-forma for Christian prayer, the Lords Prayer from Sermon on the Mount). Okay, I'll get off my soap box now. As you can probably guess, that really upset me at the time. Still makes me boil even now, although I did have a good relationship with all difficult child 3's scripture teachers (yes, we have religious instruction in our state schools - optional, but mostly taken up. We nearly became the first churchgoing family in the village to opt out of scripture class!).W

    hen difficult child 1 was diagnosed initially, it was with ADHD. I was trying to keep my concerns form him and tried to hush the doctor until we sent difficult child 1 out of the room. The doctor (who was an idiot in so many ways but not in this) told me that difficult child 1 should stay; it concerned him and surely if I was concerned, how much more worried was my son? After all, he was feeling like a failure, like a dummy, always picked on and that he was destined to always be the bad kid. On the way home after the doctor had explained ADHD to him, difficult child 1 said he felt relieved. "Mum, now I know it's not my fault. I thought I was just a naughty kid, that's what my teacher keeps telling me. Now I know it's just how I'm made."

    We did emphasise to him that a diagnosis doesn't mean he can be complacent; he has a responsibility to work towards 'the norm' of acceptability. The diagnosis just gives a sense of direction, it does not give 'an out'.

    However, especially once they have a better understanding of themselves and their place in the universe, our kids on the spectrum do their utmost to find a way to blend in. As difficult child 3 said later in the year we had the Sixth Sense class, "Mum, I'm getting better at pretending to be normal."
    And for our kids, that is pretty much how it will feel to them, lifelong. They will be able to blend in (with varying degrees of success) as they move into adulthood, but it will always feel like pretending. They need to be helped to accept this, too. But autism brings unexpected gifts, and learning to value their talents will sweeten the bitter pill.

  4. Liahona

    Liahona Guest

    We have always told them and talked about it in front of them. They have accepted it as normal. That is just how they are. difficult child 1 has a harder time with it than the others because he has x who tells him nothing is wrong with him, but difficult child 1 isn't stupid. He knows he is different then everyone else. He has also been through different diagnosis's so he doesn't identify with the diagnosis of autism or bipolar. He does know about his symptoms and what is different between him and his peers.

    difficult child 2 knows that part of his autism is that he likes to mouth everything, so when he saw Buster sticking things in his mouth he said "He is autism!" We had to explain that babies can put things in their mouths and not have autism. The way difficult child 2 said it though was that he was proud that his brother had autism like him. difficult child 2 does not like being in the life skills class though.
  5. JJJ

    JJJ Active Member

    Both of my boys were very relieved when they were told about their autism diagnosis (we told them right away). To them, it meant that they weren't "bad" and that there were people that could help them work on the things that are hard for them.
  6. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Cory doesnt have autism but he has had various diagnosis all his life...well both Jamie and Cory have had them all their lives...and they have always known. It was sort of hard not to tell them when they had to take medication every day. In the beginning at age 4 we told them they had to take wiggle medicine because they were so hyper. I didnt feel the need to go into brain chemicals with a 4 year old.
  7. Californiablonde

    Californiablonde Well-Known Member

    My son takes ADHD medications and he does know he has ADHD. difficult child 1 has been telling him all along that he has it even before he was diagnosed because she has plenty of kids just like him in her ED classes and she knows the symptoms all too well. When psychiatrist officially diagnosed him with it it was already pretty apparent and no surprise to anyone (except his dad, who is still ignorant and thinks he's "normal.") I just wasn't sure about the autism and if I should even bother with explaining that diagnosis. I don't know how difficult child would react to finding out he is autistic. I am still learning about the diagnosis myself. In my opinion, difficult child 2 is not classis Asperger's although he does fit part of it, just not all. I don't want him to feel bad about himself but I also think he needs to be aware of the reasons behind why he has such a hard time relating to others. It's hard to explain it to him right now when I feel like I am having a hard time with it too.
  8. aeroeng

    aeroeng Mom of Three

    Not autism but I struggled with Dyslexia. My parents were hesitant to tell me of the diagnoses, but when I finally was told (3rd grade) it was a gift. I always knew something was wrong, I just did not know what. The term "Dyslexia gave me an explanation, and I no longer needed to believe "dumb and lazy". It took a lot of stress off knowing what is was. Your son is probably smart and he probably knows that something is up. Give him that gift of knowing what. Do it with a very mater of fact type of approach with, and I agree let him take an active part and answer his questions.