benifits of diagnosis??? Help

Hi all, I have a 9 yo dd who I have suspected from babyhood to be on the spectrum but Iv ignored and tried to manage symptoms on my own (badly). She is high functioning but I wonder if there are any benefits in seeking a diagnosis when she has no learning disability or physical impairments. she is a high achiever at school but I just am worried that I don't have the knowledge or tools for her as she enters her teens. 

  • I do believe parents should trust their instincts when it comes to whether or not they should pursue a diagnosis. After all, you know your daughter better than anyone else. The only thing I would reassure you of is this: there's no need to be afraid of labels. We all have them, whether it's disability, gender, ethnicity, tax bracket, whatever. Our labels do not define us. If your daughter is on the spectrum then she is on the spectrum, regardless of whether a clinician puts an 'official' label on it or not. The challenges she will face will still be just as real. Think of a diagnosis not as a label but as a kind of 'passport', a means of getting support should she ever need it. Your daughter will never have to share her diagnosis with her friends if she doesn't want to, and she might end up feeling relieved because she understands why she is 'different'. Some people live their entire lives without needing a diagnosis, some hit a crisis point and need that extra support, and some people need support throughout their lives. Everyone on the spectrum is an individual, which is why trusting your own instincts about your daughter is so important.  

  • It would be worth talking to the school. There may be some subtle things that they don't pick up on at the moment. At least they could be aware of her then.

  • As binary has said this is quite common in girls, my daughter only shows minor things in school and bottles it up until she gets home, I am lucky that our school senco is supporting us as she understands masking and the long term implications that it can have, try talking to your senco you might find them equally as supportive.

    As for not wanting a label, this is an argument I had with my partner when our daughter was 2, at this point we could see she was different but he didn't want her labeled as he was worried people would judge her before meeting her, so I didn't pursue it, but at 4 and half when she was getting worse he agreed to allow diagnosis. Unfortunately due to several mistakes her referral was not done which we didn't know we waited 2 years and we're then told no refral had been made, so school supported us and sent one to cdc but they rejected it due to wording on referral letter! Spent months putting together iron clad referral for cdc but just been told now she is 8 we have to go to camhs! So starting again gp is supporting this as she witnessed my daughter having a meltdown over waiting times and was familiar with asd so saw what we do and understood that my daughter is capable of masking.

    My rambling point is that it can take a long time to get your daughter assessed so starting the process sooner rather than later is a good idea. 

    Nas has a training module on women and girls it is free until the 1St April I would highly recommended taking a look it can be a real eye opener, also a booklet called "nasen flying under the radar" is quiet informative about girls in school it is also written for schools so give a copy to your daughters school if they haven't seen it 

    Good luck 

  • Exactly why I have made an appointment in case things get worse. Or invade I'm damaging her more by not have bg the tools to provide to her to cope. I'm very scared for her and her future 

  • That is why I'm here starting to come out of denial as I can see she has started to view herself as different. but I'm unsure if she would even pass in an assessment as on the spectrum as she is so good at masking. 

  • My 10 yo ds is waiting for assessment at the moment, just realised that we're over the months from referral for these to happen, but that's another story, and it's been about 18 months since my gp first suggested he might be AS.

    You say she is high achieving at school, but struggles socially and you're not sure if you have tools or knowledge to help her as she grows.

    First off- well done for getting this far! Parenting a NT child is challenge enough, without the added strain and pressures of asd!

    Secondly - school should not judge you. If they do, it's not the right school girl your daughter.

    Next, we'll assume it is the right school. They will know that the assessment is happening because the process starts with information gathering, from you and from school. We also had an assessment from the part of the education department that helps to keep children in mainstream school - here it's called IMS (inclusive mainstream schooling, I think, used to be EMS, extended mainstream schooling) but not sure what it's called in other areas. They went into school and did a full day observation (children don't know why person is in class because they don't want the observed child to change their behaviour). That came back telling us what we knew - issues with sensory perception, social interaction, understanding, self control etc etc but they then suggested lots of ways the school, and I, could help ds overcome those issues. The support offered in school should be down to need not diagnosis. This should be the case at all levels of education. The report will back this up by showing what the needs are, it will also enable you to understand her better, give you areas to gain knowledge in and ideas for your tool kit.

    I decided to go for diagnosis because I believe my son is PDA (pathological demand avoidance) and this, although on the autistic spectrum, presents very differently to 'classic' autism and asperger's. I believe that getting a diagnosis is in the best interests of my son going forward. He's in yr 5 now and sooner than I'd like, we'll have to start thinking about senior school. Although he doesn't have to have a rigid structure to his day or week, changing school is going to be a huge issue and he is going to need a lot of support if it is going to happen successfully. The next school is currently being taken over and made an academy so we have no idea what the staff will be like, the ethos of the school or anything, so I want the backup of that bit of paper, so when he refuses to get dressed because his brother looked at him the wrong way (don't laugh, it's happened. No, do laugh, I do now, just not at the time) and I finally drag him in an hour or more late, they go 'good,  you're here' rather than 20 questions as to why he's late.

    I want the bit of paper for all the idiots he's going to meet in his life, the bosses who don't like being told 'no!' but who are prepared to try and understand the anxiety behind it. I want it gir me; do I can prove to the world, but mostly myself, that I'm doing the best I can for my child.

    Mostly I want it for him, so he knows why he feels there's a difference between himself and other people. 

    Which way to go is a personal thing with no right answer. I would advocate for giving your daughter and anyone else who may come into her life (teachers, friends, bosses, partners ...) the best possible opportunity for a happy, peaceful life. At this point in time you have to make that decision and I wish you both all the best, whatever you decide.

    (Ps. Sorry, didn't mean this to be so long!)

  • Girls with autism masking is very common. You often hear parents say their autistic child is ok in school but loses it when they get home.

    I do get you not wanting to label her but having lived that life of feeling different to my peers, I felt a lot more different before my diagnosis. That gave me a reason. Without the reason I just felt like a freak.

  • My daughter has always had sensory issues which was the reason I suspected asd when she was younger. Clothes are a nightmare. Noise is an issue, smells and taste. Eats the same meal everyday. 

  • I just don't want her labelled. She already feels different to her peers and i worry that a autism label will make her feel worse. Also school have no idea and I doubt that if they had to file a report for multi disciplinary for diagnosis they would concur that she shows no symptoms. She tells me she holds it in all day and then let's it all out (like a hurricane) at home. Biggest issues are sensory, rituals, obsessive interests, poor friendships, emotionally immature (she's 9 but my 5 year old would have more emotional maturity) she has a subtle tick, she is withdrawn at times and very full on at other times. she suffers massive anxiety when we have to go anywhere. Birthday parties are a no go. Any type of change in routine can be overwhelming for her. Yet in school she just goes with it. I'm so lost. 

  • It allows her to get support if things get worse for what ever reason. She might not need any support now, but it's a safety net just in case :) Better to have it than not!

  • Actually, no, I tell a lie: I did my A levels, went to uni, dropped out, went to uni a second time, dropped out, got my diagnosis, went to uni a third time, got a First (in a subject that was completely unrelated to my first two attempts). I'm veering way off topic, but I just wanted to correct myself! Sorry.

  • Without a diagnosis, I would not have been able to access the support I needed to sit my A level and university exams when my sensory issues and phobias became too great for me to sit them in a conventional exam hall with other students. Academic ability alone will not necessarily guarantee an individual can complete their education, and sensory problems can intensify in autistic individuals as they get older and social dynamics/environments become more complicated. If your daughter ever were to hit some kind of 'crisis' point and need immediate support, her diagnosis may help her to access the right kind of support as quickly as possible. (Imagine having to go through the process of pursuing a diagnosis to get access to support while she is in some kind of meltdown because of an unexpected situation.)

  • I know that I need a diagnosis as an adult to deal with ignorant Neuro Typicals but have always known I was different.

    Upon diagnosis, the markers/traits will start to become clearer plus you could use that, with help, to identify triggers and coping mechanisms. It may also provide identified strengths that your daughter has which is a plus for possible career opportunities.

    As it is a spectrum then we are all different and may also be high achievers (or in part fail at exams because our learning is not reading/repeating but doing) as well as having difficulties.  I now know my condition is much worse when under stress/pressure/anxiety that I have no control over and I need a full diagnosis.

  • It will allow you to be able to get support for her in school should it if ever be needed. This isn't necessarily academic support. It can be emotional etc. It may also be of help to her as an adult and getting jobs etc.

    It can be beneficial to you as you may be entitled to DLA money and you can get carer discounts when you take her out. You may be able to access services such as CAHMS to help her and you manage her behaviour etc at home.

    It will help her to understand herself. I wish I'd been diagnosed as a child. I spent a lifetime wondering why I was so different. What was wrong with me. I needed the answer.

  • Hey, 

    You may find the behaviour section on the NAS website helpful, it’s full of information on common behaviours and possible strategies:

    Here’s a link:
    http://www.autism.org.uk/living-with-autism/understanding-behaviour.aspx

    Hope this helps, 

    SteveMod 

  • My daughter is 8 and we are trying to get her assessed, have been since she was 4 (but that's a different story!) my daughter is also one of the top students in the class academically, but her social skills are not great and she has started having sensory problems in school which are starting to impact her learning, I also know that things can get alot harder for her as she gets older so I am pushing for diagnosis now so she can move forward not seeing things as some unknown flaw in her, just a different way of thinking and seeing the world .