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Assessment of women and girls

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The assessment of women and girls can sometimes be quite challenging for the diagnostic team. What are peoples' experiences and do you have any comments or ideas that you would like to share?

 

Edited on March 14, 2017 - 10:52am

March 14, 2017 - 9:58am

Hi, I have a 16 year old daughter just diagnosed as 'well within the spectrum. 2 main initial points : 1. Initial screening tool used by Camhs did not pick up need for full screening ? Fit for purpose . 2. It took 4 1/2 years from when I first voiced concerns. Are camhs the right resource as they are resource led and not an 'autism team' as referenced by Nice guidelines. They have no O.T and therefore suggest we found Sensory assessment (much needed) 

post 16 education and assessment of educational needs is another big issue. Our daughter has missed most of secondary education due to severe anxiety and health issues but we cannot have an ed psychologist assessment unless she is in education !!! 

Just the tip of the iceberg really ! A further point is that camhs arranged psychotherapy prior to diagnosis. She really struggled with this and copes much better when there is a clear guided structure. She does not understand her emotions and this adds another level of distress and potential melt down and therefore in retrospect it was potentially harmful for her. 

Wer'e struggling ..... 

March 15, 2017 - 2:31pm

My daughter is autistic (Aspergers type) & has ADHD too. It took until she was nearly 9 before she was 'diagnosed' but looking back, the signs have been there for years & years - if only someone (GP probably) had connected the dots. 

I think there is still a tendency to think that because ASD girls are so 'perfect' at school, well behaved, polite, rule abiding & they don't cause a fuss that it must be the parenting that makes them meltdown at home. Instead, if diagnosticians understood that girls 'explode' when they get home because they have been holding it together all day, that could be a quick indicator of potential ASD... That key difference between school & home. 

 

 

March 15, 2017 - 4:17pm

Sadly both of you have provided insight into what does seem to be happening in some sitautions for our girls and women. The comments you have made have provided great insight into this area and I am hoping that this will help other parents and professionals. Thank you. There is quite a lot on Network Autism about this topic and I know that the NAS have plans for some great new resources in the future.

March 15, 2017 - 4:21pm

The other thing that parents in our peer support group say is that their daughters are initially not 'diagnosed' because: 

They make eye contact so can't be Autistic

They are imaginative so they can't be Autistic

They are sociable so they can't be Autistic 

YES they can be - The difference in presentation between boys & girls with autism needs to be understood far better. 

Thank you. 

March 17, 2017 - 12:28am

I am female and wasn't dx'd until the age of 46. It is expected that someone who is autistic will have one or two main special interests. This isn't the case with me. My interests have changed throughout my life. I tend to jump from one thing to the next. I like collecting facts about my interests but I don't collect objects. I was asked about this in my assessment - do you collect objects?  I collected objects like stamps as a child but not as an adult. To me, gathering up things to seriously collect doesn't seem the right thing to do and so I dont' do it. I might collect a certain type of ornament for a while like cows but they are not lifelong collections. Just something I'd do for a laugh for a while. 

Maybe males are more likely to do this although I'm not so sure. Another thing I was asked is: 'Do you like to take the same route always when you go places'. I tend to get bored by the same route and will maybe take two or three different routes varying them when I get fed up with each. I know many people on the spectrum who would answer yes to all these questions. I also wasn't a studious child who sat in the school library all the time. I believe there are many autistic people being missed because it is assumed they would do this. I hung around the other girls in the playground hoping to be asked to join in. I would take any opportunity to go about with my sister or even my brother and do whatever their friends were doing. As an adult I have the type of nature where I wouldn't hide away. I will be out amongst NT people but maybe sitting on my own in a coffee shop.

The fact my Aspergers was missed for such a long time meant that I began to really push myself out of my comfort zone about the age of 30 and would go to all sorts of places on my own. I began to try to get used to feeling stupid but not letting it bother me, knowing that in the long run it would make me more confident.  I'd see people turn and stare and try to put a happy look on my face and keep going doing a lot of self talk. So I appear very independent but couldn't cope at work due to cognitive difficulties, memory problems etc. I also was fairly self aware and had studied intensly from books - body language, confidence tricks, popular psychology etc. I studied myself and tried everything I could to make myself a person who would be able to fit in a bit better. 

One of these things was to put myself in the scenario of many job interviews and I attempted not to care if I make a total fool of myself. I was using the experience to try and improve my skills at interviews and believed that even if I could improve a little bit then it could mean me having a job where I would be happy. I managed to figure out the 'game' of interviews after a while which helped my confidence in speaking to strangers (there is always a pay-off)! I had seen my brother who was extremely quiet become good at interviews by this means. I also was aware that often it is the quieter people who seem more attractive as interviewees especially for the types of jobs I was applying for. 

I stopped working about fifteen years ago and I live a fairly happy and contented life. Work was very bad for my mental health unfortunately and I tried many jobs and careers. Some of these jobs were very interesting but I just couldn't cope especially with full time work and harassment at the same time. I volunteer now which is nice. 

I presented at my assessment as a female who could talk fairly confidently with a quiet friendly voice to medical personnel since I had mainly worked in hospitals. I could not speak and keep my face looking relaxed and on the person. In order to think I realised from the Psychologist that my eyes move around looking about the room. As a young person I found eye contact so difficult but was told by a colleague that I looked evasive and like I was giggling. I spent many years trying to look at the person I was talking to especially when they were doing the talking. I also practiced at my job intereviews looking at each of the people on the panel as that is apparently the correct thing to do so as to include everyone. I spoke to another female after I received my diagnosis and she also had become very good at job interviews for the same reason. She could put on a good act after so much practice. 

Despite all this, I received a diagnosis. I was lucky to be assessed by a person who was well known in the field of Autism. This person had interviewed many people and they did mention that I was very good at covering being autistic. I was told that I was lucky as I could fit in at the edges of the Neurotypical world. This is what I like. Being able to be a part of things on the edge and I usually find someone to link up to who is a bit on the Aspie end of Neurotpyical ie a quiet person.