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Is diagnosis essential?

True self

Hi to all

I have found reading the forum very interesting and enlightening. I think being able to ask questions and getting answers valuable with people who understand and don't think you are odd/different. I ask my question about diagnosis for two reasons. Firstly my daughter was referred to camhs about 10months ago and had an initial assessment for behaviours that were what we thought were tourettes with some behaviours around sensory, self care and anxiety that we could not work out. Our thoughts were to get some family counselling and hopefully understand what has been going on. Camhs decided to send her for AS assessment and family therapy. Nothing happened so far apart from adolescent AQ questionnaire which I know will show definite suggestion of autism from us and school will just thinks she is anxious and her mum (me) is probably the issue. But even having an awareness of AS has given me the key to understand my daughter and drag my husband along in the process. I have avidly read and read, asked questions and things are better as we have now parented her with more understanding and she is more open with us. But I have a need to know what is going on in her head and how she sees things but have to try and tread carefully as my natural wish is to come out and ask but I have to lead into things delicately which I can but not easily. 

My daughter is 15 and going through exams so at the moment does not want to go and see anyone. She just accepts her brain thinks differently but I tell her everybody thinks differently as I want her to embrace difference and not see it as something to hold back. I wrote to camhs and explained about things we had found out that she does not understand why you cry at a sad film when it not real, that you can't put yourself in a friends shoes as they are too big and many more. At the moment we are not pushing for diagnosis as many things have improved, we are working on other things and everything else we accept as her (unique and utterly wonderful. )

The thing is the more I read and analyse, the more I realise how socially unaware I am, how I will limit contact with people I can't read, how I am almost mute in large peer groups and have managed to create a persona of invisibility except to my family and few close friends. How I love my own space, reading fiction and facts and love days where I can do this and not have to comply with cooking, cleaning, and communicating with others. If I could have one complete day like this a week it would be bliss to allow me to cope with all the times I have to be social and comply with what is expected. I do like people but need to plan social meetings and hate being caught unaware if people arrive unexpectedly. 

I have even realised that when I am talking to colleagues that my eyes must dart about at times as I start to look over their shoulder etc and find they turn to see who/what I am looking at. I was not even aware I did this until recently. About four years ago we had to change our whole life as my husband came out of the forces, I had to change my job, buy our own house and make a new friend circle. I have always been a military daughter/wife and I have realised I knew what was expected but this major change meant I lost me and have been doing for others ie family and work but have put on loads of weight and dont know who I am. I have wondered if I have withdrawn until I could make sense or as a protective mechanism to stop me going into a deep depression. 

I do believe I have autism traits and score about 30 on aq test, there is a strong thread of these traits that run through the family, mother, sister, maternal grandmother and cousin. I have managed to be successful in a career that I love, as a wife and hopefullya decent  mother to three and these traits have definitely enhanced how I approached these roles. But I do have a wonder if I may have autism or something related and knowing would help me to embrace and understand my differences and the constant feeling that I feel odd/different and why?

sorry for the long post but this is my need for thoughts from people who will understand.

many thanks

  • When you ask if diagnosis is essential, do you mean for yourself or your daughter or both of you?

    My 13 yr old daughter was only diagnosed this year and I wouldn't not have the diagnosis.

    As for the traits, the more I see and watch my daughter and look further afield to my family, I can see a lot of traits in other people.  I think the only one I don't see traits in is myself yet I can relate to some of the stuff in your OP especially that of having a day to yourself and time alone.

    I am quite a socialable/friendly person but I think there are many people in this world that I just can't be bothered with because they are boring/self important/racist/stupid/mean etc.  I could go on but you understand what I mean?  I'd rather be alone than in the company of someone that I don't enjoy.  I relish time alone but that's because I have a daughter than is very demanding.  I don't have a partner/boyfriend because its too much like hard work.  I could find lots of things in myself that could fit but lots of things that actually don't fit.  

    I think my point is, maybe if one family member has ASD, then it follows that others are likely to have more significant traits than others?  Picking myself to illustrate the point probably wasn't the best example because there are people in my family that have much stronger traits.  My son, for instance, had very strong traits as a child but shows far less now he's a young adult.  Where did that go?  

    In answer to your question, I think the only person that can truly know whats right for you and your family is you.

  • Thank you for your reply Hope. From the reading I have done around female presentation of aspergers then I do have traits that have run through childhood. My needing to be invisible as I don't understand situations and this has meant I could observe to try and work out the dynamics. I hate to hear people eating, my constant need to tap my feet, or use my fingers to fold over things, the need to always have oral stimulus ie I have chewed paper for over forty years, I can only have people in my space when I initiate it. 

    I also had a dad who went away a lot and a mum who had her own problems so my default mechanism has always been to remain quiet and be insignificant. I only ever remained on the outside of friendships and only ever wanted one friend who was mine and was jealous that she played with other people. I have to force myself out of the house at times and having a husband and children to go out with gives me reason.

    I act when I am in group situations when I have to talk. I can manage one to one but with groups find difficulty. I have never felt that I fitted or belonged. Wondered why I was different/odd, how could I be popular and  don't have a clue how people think of me apart from quiet and helpful. I have a son who finds friendships so easy and is very popular but I don't know how he was able to achieve this as I dont think I taught him those skills. 

    Aspergers is a spectrum so everyone presents differently, also depending on the triad of impairment there may be a part that is more prevelant. For me this is around social and looking at information there are many women who don't realise they are on the spectrum until a child shows characteristics or if so many of life's stressors appear at once you go into a meltdown that lasts like me for years and you initially don't know what is going on. 

    So yes I have had these things all my life but didn't realise and the other time I had major change when I went to university. I ended up with IBS, bulimmia and thoughts that I don't want to be here as I can't cope with all that is going on but wouldn't commit suicide as I didn't want to hurt my family. My retreat was finding one supportive friend and going home all the time. 

    I have obviously found my own coping skills and don't need any support but I would like to know if this is what runs through the family so I can be a help for my daughter in the future if she has children of her own with these characteristics.

  • Autism is a lifelong condition, so presumably you would have had symptoms since childhood? For example, problems making friends and/or maintaining friendships; sensory problems - feeling overwhelmed by large groups of people, noise, movement, touch, balance difficulties; uneven skills profile; poor comprehension - taking metaphors/irony/sarcasm literally; problems regulating emotions; and extreme anxiety or other mental health issues often occur with Autism.

    Having autistic traits does not always been you have Autism. Autism/Asperger's would only be diagnosed if you have enough of the traits, they have existed since early childhood, and they significantly impair your life. For example, you might have depression, been bullied and suffer as a result, have problems at work, disabling anxiety,  etc. If you feel you are suffering as a result of these traits, then certainly pursue a diagnosis.

    However, the traits do occur in relatives of those with Autism; there is a genetic risk, so even if you would not be eligible for diagnosis, you could still have a sub clinical form of the condition (the Broader Autism Phenotype).