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Two on the spectrum

FrustratedMummi

Hi folks.

My son was diagnosed with severe high dependancy autism 2 years ago (aged 5) and my daughter was examined 4 years ago but was borderline, now with the push to diagnose girls who tend to be a little more difficult to spot today I was informed that our CAHMS department has come to the decision to diagnose her with Aspergers but also requested that they can investigate concerns they had that she also had ADHD - The issue I have is that my daughter (who is 9) was present for this entire conversation and when the specialists asked her if she had any questions or thoughts she sat there quietly and simply shook her head, but when we were getting on the bus my daughter suddenly started getting very upset and asking me what it meant, what was wrong with her, did she have to leave her school now and go somewhere special like her brother is doing in September?

All of this just kind of knocked me off my balance, life has been very challenging for us, I am a single mother, I have clinical depression and Aspergers too, I don't have many friends and now I'm living and coping with 2 children who are also on the spectrum, who tend to be either a trigger for each other or a rock for each other when I cannot be and now I have my daughter asking me all these questions that I am stumped to answer. The only reply I could give her was: "You are still you, nothing has changed, we just know how best to help you at school now" but she looks at me like my answer isn't good enough and she has to know more because she doesn't understand.

Can anyone help me?

  • Hi FrustratedMummi,

     I had a very similar experience with one of my sons, The first was diagnosed and we were left to break the news as we saw fit. The second, the consultant just blurted it out. My son was convinced he had something terminal and was truly terrified. Sometimes, I think these people can be pretty insensitive to the fears that those on the Spectrum can have.

    For my Second son it's been a real issue. He strived to 'Fit In' regardless, but as he's aged he's slowly coming to terms with his difference. 

    Maybe with your Daughter it will be a similar slow process of coming to terms with what it means. You sound like you have explained it to her very well, So try not to be too hard on yourself. As someone on the spectrum yourself; and as her mum, you probably have way more incite in your own child than any consultant and that is a real advantage in supporting her.

    I'm sure that I don't need to tell you that many on the spectrum mull over thoughts fairly obsessively at times and we worry way more than most. The truth is that their are probably many more options open to her now and she will hopefully get some tailored support for her needs. More importantly, this early intervention could make a huge difference for her and diagnosis doesn't necessarily mean a special School, she may cope well in her current School with the right support. Try and focus on the positive. Also see if you can find an Autism group in your area so you can share and meet with others in your position.

    I know for some that issue fills people with dread, but believe me it helps to know your not alone and that others share your and your childrens experiences. I struggled for years alone as a single mum with small children so I have some idea of how that feels. Meeting others with ASD and talking to those here on the Forum has really opened up my world and helped me on my journey.

    Take each day at a time, take each hurdle as it comes and remember you are doing your best and thats all that matters.

    Regards

    Coogybear XX

  • I am not surprised having experienced this first hand with my eldest when he was diagnosed.  I had not mentioned my self diagnosis to him in case I was wrong, yet the psychologist just blurted it out and I left with the very confused frightened boy who, needed lots of reassurance.

    I have also found gp's to be just as thoughtless and tactless, often having to reassure my son's afterwards, as even though they know  my son's have asd they still make stupid comments like "you're how old.. you don't need ...."  quite often belittling them.  Sadly a lot of gp's have very little autism awareness, so we end up picking up the pieces..