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When to tell your child they may have autism?

NAS67153

Hello there, this is my first post here. 

My youngest daughter is 8 and I suspect she has autism. Her behaviour at times is very challenging. I work in education and am by no means an expert on ASC but I have completed courses and training, as well as training about autism in girls. As well as working with children with autism. I recognise lots of signs in my daughter and have always felt she may have autism. Unfortunately due to her other parent disagreeing I never felt able to pursue my suspicions until recently. 

School have had meetings with me to discuss things they've noticed, which are all based around the way she interacts with other children, as well as her anxiety. She was due to see camhs just before lockdown but has now been removed from the list along with everyone else until the covid crisis is dealt with. 

My intention was to see what CAMHS say and then ask for an autism assessment. I've also completed the initial parent questionnaire with a private diagnosis company who said from her score autism is a possibility. I'm aware I could get a private assessment within 6 weeks (probably not at the moment) but the costs are huge. But then the wait for an NHS assessment is at least 18 months.

My question is as per the title really. When did you /would you mention autism to your child? She would not go to assessments and meetings with paediatricians without asking questions, so I couldn't wait till diagnosis surely? But I worry about giving her all this information about autism and why I think she has it, only for them to say no she has not got autism. Has anyone else been in the same boat and what did you decide to do? How did it go down ?

Thanks for reading and I hope I've not rambled on too much! 

Parents

  • Hi

    excuse me for writing this way , but I wonder if her other parent is the real reason you are in doubt.  Otherwise, would you feel free to tell your daughter  - are you worried that once you involve her, she may tell the other parent?

    Anyway, aside from this, I would say give your daughter a feeling of being in control early on.  If she has anxiety and this is impairing her you can involve her a little and say we will look to get help for your anxiety.  Don't presume she is autistic until she actually has the test.  That way, if she does turn out to have something related such as generalised anxiety disorder , it's still about her and her wellbeing and not a feeling she has failed a test.

    If she feels you are sneaking around and "processing her" it could make her more anxious and demand-avoidant.   

    My nephew is autistic and was diagnosed at 7. It's in the family so the parents were pretty sure.  While waiting for diagnosis , his parents began to use autism terms like "meltdown", "shutdown" and involved him openly in those words, without actually mentioning the word autistic. 

       When they had the assessment they said " we're going to talk to someone about meltdowns" or " we're going to talk to someone about  why you get anxious" .  By the time the assessment came, it was only a case of getting a name that covered the collection of concepts that were already familiar to him.    Similar to what   has said, the wellbeing is the most important and if she is already anxious , that is enough reason to get help.

    By the way, he is doing really well now. 

Reply

  • Hi

    excuse me for writing this way , but I wonder if her other parent is the real reason you are in doubt.  Otherwise, would you feel free to tell your daughter  - are you worried that once you involve her, she may tell the other parent?

    Anyway, aside from this, I would say give your daughter a feeling of being in control early on.  If she has anxiety and this is impairing her you can involve her a little and say we will look to get help for your anxiety.  Don't presume she is autistic until she actually has the test.  That way, if she does turn out to have something related such as generalised anxiety disorder , it's still about her and her wellbeing and not a feeling she has failed a test.

    If she feels you are sneaking around and "processing her" it could make her more anxious and demand-avoidant.   

    My nephew is autistic and was diagnosed at 7. It's in the family so the parents were pretty sure.  While waiting for diagnosis , his parents began to use autism terms like "meltdown", "shutdown" and involved him openly in those words, without actually mentioning the word autistic. 

       When they had the assessment they said " we're going to talk to someone about meltdowns" or " we're going to talk to someone about  why you get anxious" .  By the time the assessment came, it was only a case of getting a name that covered the collection of concepts that were already familiar to him.    Similar to what   has said, the wellbeing is the most important and if she is already anxious , that is enough reason to get help.

    By the way, he is doing really well now. 

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