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is being diagnosed worthwhile?

gempaul

Hi,

My name is Gem, i am new here and joined up for hopefully some advice with our situation as a family. ( unsure if this is the correct part of the forum to post in? )

We are a family of 5, my husband,myself and our 3 daughters ( aged 16,13 & 9 ) , we are a very settled, happy family with no major issues or problems and all generally get on very well, apart from the usual family sqabbles all families have.

But basically we are convinced our eldest daughter has ASD as she has always been different and has had tests in primary school by some specialists as they thought she had mild learning disabilities etc but nothing ever came of it apart from a little extra support through primary and secondary school. Shes coped ok with school and is due to take her GCSE's this year - so far it looks as though she will get decent grades ( C'S,D'S,E'S ) which are all passes. Although she has no interest in education and has never really enjoyed the learning part of school so its been a constant effort on our part to push and encourage her with homework and so on.

Autism or Apsergers were never mentioned to us by any of the specialists or teachers throughout her school life as they seemed to think she was doing ok, not as well as the rest in her class generally though.
It has only been as she has become older ( the last couple of years ) that we have decided to look into other possible causes to the way she is sometimes. And i stumbled upon ASD, she has so many of the signs and ways that i am pretty certain she has it. As it is becoming even more obvious as she gets older, people would put things down to shyness or being lazy for her ways in the past.

But my main question is - Is it worth us going to the Doctor to get her diagnosed officially?
We havent mentioned to her yet that we think she may have this as we have not wanted her to use it as an excuse for some of the normal teenage ways ( tantrums or being spoilt ) or for her to feel as though she is different in a bad way.
So we really dont know what to do, the last thing we want if for her is to be labelled or treated differently so she stands out and cant make new friends when she attends college in Sept. But we are so confused as to what to do next.

She has difficultly keeping friends, so now at 16 has no social life and tends to either watch tv all day or tag along with us and her little sister. She doesnt seem to have any desire to be independant or do things other 16 year olds seem to be doing.
Our 13 year old has a very busy social life and we hardly see her on the weekends as she is so busy!

Any advice with this would be appreciated as we are really very confused and dont know what to do for the best.

Thanks in advance

Gem Smile

  • I have the same issue. Do I need to be diagnosed? I think I have aspergers. I've done the online tests (I know these aren't sufficient by themselves) and score between high 30 and low 40. When I see articles on how autism and aspergers affects people with it, I relate perfectly. But most people think I don't have communication problems, and they are right, because with people I know I don't have the same difficulty and some of that is down to my Anxiety disorder. 

    I asked my doctor and he said it's definitely not autism because I can communicate with him and no one will diagnose a 36 year old. 

    This isn't new to me, for a long time I've thought this and I've definitely got ADHD, but that didn't exist when I was at school. But if diagnosis can help I want it. If it is aspergers that makes me like this and because I'm tired of not understanding why I find everyday social interactions harder than everyone else, I need it, don't i? more so now because I think it's impacting my ability to progress in both work and home. 

    Am I just looking for excuses? 

  • Hi Both,

    Thankyou very much for the replies, they are much appreciated.

    We have purchased the book Coogybear mentioned plus another one which looked helpful too so we have decided to have a read through them ourselves first then sit our daughter down and have a chat with her regarding this and see how she feels.
    She doesnt like reading so i think trying to get her to read leaflets or books herself just wouldnt work. But at least by educating ourselves we will have answers to some of the questions or queries she may come up with during the chat.

    Then let her make the decision whether she wants to actually go to the doctors to be diagnosed or not. As we would never make her go down this route if she didnt want to as shes quite capable of thinking for herself and has quite set ideas on things.

    Again thankyou very much, this has helped alot. :)

    Gem

  • Hi,

    I must admit I tend to agree with Hope. I'm 50 and only just diagnosed and have suffered significant difficulties thoughout my life, as a result of not knowing.

    Gp's don't seem very up with the female presentation of ASD, so you may meet resistence. My instinct would be to hold firm and insist on an assessment as it's likely you may be fobbed off initially.

    Early diagnosis can make a significant impact on her well being and, as mentioned, the waiting lists tend to be long.

    Along with diagnosis, I strongly reccommend you look at her well-being. 'Living well on the Spectrum' is a Workbook by Valerie Gaus and may allow her to look at elements of her difficulties and strategies to help throughout life, especially as a female.

    www.amazon.co.uk/.../1606236342

    Ensure that any assessment you do have is coupled with support. You sound like a great family and family support also has a big impact, not only on how the diagnosis is recieved (If you choose to go ahead.) But also on the actions she takes to maintaining a happy lifestyle, post diagnosis.

    Coogy

  • Yes, being diagnosed is very important if the signs are there and the person's life is negatively affected by them.

    I was diagnosed at 21, and like like your daughter, was considered to have learning difficulties at primary school. I was assessed by outside agencies and it was recommended that school Statement me, but nothing came of it, and I trundled through school with very little support. I coped well enough to fly under the radar, and I was a very late developer, but with initial support from my parents (organisation skills were very poor), I eventually flourished; I even went to University.

    However, despite avoiding overt bullying, I was excluded at school, and my emotional and mental health suffered. I still have quite low self esteem, which is a legacy of not knowing why I wasdifferent and why I struggled to make friends. Your daughter may well be wondering why she is different - it might be a good idea to sensitively broach the subject with her because ultimately it should be her decision whether or not to pursue a diagnosis. You could leave some leaflets about Asperger's around the house so that she can find out about it by herself and in her own time.

    I personally think the assessment process should be started as soon as possible - waiting lists can be very long.