Telling your child about their diagnosis

I had to tell my younger daughter even before she was diagnosed, she was seven and I knew for sure she was autistic and she was becoming self-aware and blaming herself for her behaviour and saying she was a bad person.  She was so negative and sounded depressed it broke my heart so I had to explain to her that although it wasn't an excuse for bad behaviour, mummy believed she had autism so that meant some of her behaviour wasn't her fault, it was because of the condition.

The centre that diagnosed her told me not to tell her when she was diagnosed, so I told them I already had and they grimaced as if to say I had done the wrong thing.  However, only the parent knows the child and the doctors are generalising without knowing the situation or individual child.  I think it's a judgement call and perhaps it's a good idea to read up a bit before you decide.

What I would say, is read about all the positives of having an ASC, talk about the fact that you can still do whatever you want to do.  A good way of explaining it is that whilst "ordinary" people have a more even balance of talents and inabilities, in ASC you have more extreme balance, so you might be worse than others at some things, such as friendships (or whatever) but you are likely to be much better at others such as memory, a particular subject etc.

With my older daughter, things are much more complicated.  I knew she had AS at around age 6-7 and I asked her school at the time she was 8 to help getting her assessed.  They arranged an appointment with the Ed Psych following a minor amount of classroom observation of her by the SENCO and they told me they didn't think she had it as they hadn't seen any signs.  Well as we know autistic children frequently behave differently at school to home, but as I knew nothing at the time about assessments myself I thought it was an assessment that she'd had with the Ed Psych.  I also have a problem missing text in reports and letters, so I didn't pick up that I was told in the report following the meeting, that he had said a paediatrician would have to do the assessment and if I wanted to pursue it to let him know.  So I think it was a combination of trusting them (stupidly as she had every AS trait going) and missing wording in the report that I didn't follow it through.

Now, she is 12 and had her assessment a few months ago at age 11 and being at that age of not wanting to be different she is in massive denial and trying to deny all her traits and her assessment was inconclusive.  She made me promise not to tell her the outcome of the assessment as a condition of agreeing to attend, and so she doesn't know what the outcome was.  Because CAMHS had more than enough information to diagnose her but messed up in relying on the outcome of the ADOS-2 (which does not have a high enough rate of identifying high-functioning people @ 77%) they failed to diagnose her.  This is despite her beign clearly autistic on the ADI-R and history and me giving them lots of examples of her literalness, socialising problems and failure to understand humour as well as meltdown behaviour.

So I am now fighting CAMHS to get them to diagnose her and it is dragging out due to her resisting further appointments.  It would have been so much easier had she been diagnosed at age 8 as even though she would have probably slightly resisted she would have been so much easier to talk to about her diagnosis then.

So my message is this, I think it's usually fairer to the child (unless there is a compelling reason not to) to tell them (but to do so in the right way) before they get too old.  The younger they are the more they will have time to accept it and not reach the stage where they become distressed at being different and resenting their parents for not telling them why.  I have read of adults whose parents withheld the information and they were bitter and angry about it.  If you think about it, trying to be "normal" when you aren't and trying to fit in when you never truly will, is so difficult when you have no reason to believe you shouldn't be able to.  If you have a reason why, it all makes sense.  Sure, some are angry at having this difference (even though I sought my own diagnosis I still have angry moments about "why me") but if you arm yourself with information before you do it and stay as positive as you can about it (point out famous people with it etc.) you will have the best chance of not getting a bad reaction.

I had to tell my younger daughter even before she was diagnosed, she was seven and I knew for sure she was autistic and she was becoming self-aware and blaming herself for her behaviour and saying she was a bad person.  She was so negative and sounded depressed it broke my heart so I had to explain to her that although it wasn't an excuse for bad behaviour, mummy believed she had autism so that meant some of her behaviour wasn't her fault, it was because of the condition.

The centre that diagnosed her told me not to tell her when she was diagnosed, so I told them I already had and they grimaced as if to say I had done the wrong thing.  However, only the parent knows the child and the doctors are generalising without knowing the situation or individual child.  I think it's a judgement call and perhaps it's a good idea to read up a bit before you decide.

What I would say, is read about all the positives of having an ASC, talk about the fact that you can still do whatever you want to do.  A good way of explaining it is that whilst "ordinary" people have a more even balance of talents and inabilities, in ASC you have more extreme balance, so you might be worse than others at some things, such as friendships (or whatever) but you are likely to be much better at others such as memory, a particular subject etc.

With my older daughter, things are much more complicated.  I knew she had AS at around age 6-7 and I asked her school at the time she was 8 to help getting her assessed.  They arranged an appointment with the Ed Psych following a minor amount of classroom observation of her by the SENCO and they told me they didn't think she had it as they hadn't seen any signs.  Well as we know autistic children frequently behave differently at school to home, but as I knew nothing at the time about assessments myself I thought it was an assessment that she'd had with the Ed Psych.  I also have a problem missing text in reports and letters, so I didn't pick up that I was told in the report following the meeting, that he had said a paediatrician would have to do the assessment and if I wanted to pursue it to let him know.  So I think it was a combination of trusting them (stupidly as she had every AS trait going) and missing wording in the report that I didn't follow it through.

Now, she is 12 and had her assessment a few months ago at age 11 and being at that age of not wanting to be different she is in massive denial and trying to deny all her traits and her assessment was inconclusive.  She made me promise not to tell her the outcome of the assessment as a condition of agreeing to attend, and so she doesn't know what the outcome was.  Because CAMHS had more than enough information to diagnose her but messed up in relying on the outcome of the ADOS-2 (which does not have a high enough rate of identifying high-functioning people @ 77%) they failed to diagnose her.  This is despite her beign clearly autistic on the ADI-R and history and me giving them lots of examples of her literalness, socialising problems and failure to understand humour as well as meltdown behaviour.

So I am now fighting CAMHS to get them to diagnose her and it is dragging out due to her resisting further appointments.  It would have been so much easier had she been diagnosed at age 8 as even though she would have probably slightly resisted she would have been so much easier to talk to about her diagnosis then.

So my message is this, I think it's usually fairer to the child (unless there is a compelling reason not to) to tell them (but to do so in the right way) before they get too old.  The younger they are the more they will have time to accept it and not reach the stage where they become distressed at being different and resenting their parents for not telling them why.  I have read of adults whose parents withheld the information and they were bitter and angry about it.  If you think about it, trying to be "normal" when you aren't and trying to fit in when you never truly will, is so difficult when you have no reason to believe you shouldn't be able to.  If you have a reason why, it all makes sense.  Sure, some are angry at having this difference (even though I sought my own diagnosis I still have angry moments about "why me") but if you arm yourself with information before you do it and stay as positive as you can about it (point out famous people with it etc.) you will have the best chance of not getting a bad reaction.