I am a married woman in my 30s with two children. Three years ago, I was diagnosed with depression. One of the main triggers was the breakdown of my relationship with my sister. A small disagreement turned into a blazing row. We have never been close, but I had no idea she felt such hatred. She said she had disliked me for some time. She said I was cold and vindictive, that no one liked me and it was no wonder I had no friends. She cut off all contact and hasn’t spoken to me since.
I think the real reason her accusations were so painful is because deep down, I know she is right. I have always felt like an outsider who never quite fits in. From a young age, I’ve always felt distant from those around me. I feel I have very little in common with people and that we are on different wavelengths. Even after becoming a mother myself, I continue to feel this way.
I no longer see my father or sister and the only reason I still speak to my mother is because of her persistence in calling me every week. It’s not that I dislike her – I do love her – but I just don’t find her interesting to talk to. This wouldn’t be a problem except that I find it almost impossible to lie or pretend. I can see this hurts her and I wish things were different, but I just cannot seem to change my behaviour. Outside my family, I’ve never been very good at making close friendships. I’m not particularly shy, enjoy meeting people and come across as socially confident. But deep down, I am awkward and insecure. I realise now that, over the years, I have learned how to present myself in social situations.
I don’t think I’ve ever met anyone I felt completely understood me or around whom I could be myself, not even my husband. Despite my awkwardness, I have always secretly longed to connect with someone who will understand me.
Recently, I have started to wonder whether there is something more to this. Over the years, my son has shown behaviour that has led several teachers to suggest he might be on the autistic spectrum. Although he has been assessed twice, he has not been diagnosed, presumably because he is extremely intelligent and high- functioning. When I began to research autism in women, things suddenly clicked into place.
I have thought about getting a formal diagnosis but am not sure how to do this. I am not even sure if I am on the spectrum and, if I am, am I too high-functioning to be diagnosed? Even if I am assessed and diagnosed as on the spectrum, would this benefit me?
Thank you for your longer letter, which I had to cut. No one can diagnose you from a letter and I’m sorry that your efforts to get help so far have resulted in people not fully responding to your concerns. General counsellors and GPs may lack the specialised skills one needs to recognise autism or Asperger’s. You need to be referred to someone who has experience of diagnosing women. Women present differently and tend to be better at copying social skills to fit in; in other words, they may be better at masking their symptoms. Being referred to the right person is key. The Autism Act 2009 says that adults are entitled to have an assessment (England).
I spoke to Anna Rattlidge from the National Autistic Society (autism.org.uk), who helped me in my reply. Would it surprise you to learn that the NAS gets lots of inquiries, just like yours? You are far from alone.
There are two ways for you and your son to get properly assessed: via the NHS or privately. I appreciate that you say your son has already been assessed twice and he may, indeed, not have autism. The NAS has lots of information on its website or you can call its helpline (0808 800 4104) about how to get an assessment plus much more. I urge you to please ring them.
Why get a diagnosis? Well, afterwards you should get access to specialist support services such as seeing a counsellor to support you, which would do much, I think, to help with your depression and loneliness. You could also join local support networks where you can meet others and there can be huge relief in gaining a better understanding into the way you are. It might also help your family if you wish to mend bridges with them.
You can also get support from your employer – if you choose to disclose a positive diagnosis. Under the Equality Act 2010, employers are legally obliged to make adjustments for people with autism in the workplace.
All this may help with some of the loneliness and depression. If, after all, you are not diagnosed, I’d really like you, anyway, to please look into some form of counselling for yourself.
This article first appeared in The Guardian Family on 21 March 2014.