There is a point to diagnosis!

There is a point to diagnosis

Sorry this is a bit of a moaning, ranting and miserable post, I will try to be more lighthearted next time!

Trying to get an autism diagnosis as an adult is incredibly frustrating. Well this is my experience at least and I get the impression it is for many others. I went to the GP about 13 months ago and asked for a referral for an assessment. The doctors reply was “What’s the point? You’ve got to adulthood and you seem to be doing OK so I don’t see any value in it”. Shocking! The more I think about it the more I find it unbelievable. I think it’s perhaps more to do with ‘well we can’t do anything about it and it costs money for the assessment so let’s just not eh’. Luckily I told the GP it was important to me as I needed an explanation for why I suffer anxiety so badly and why I find being around people so difficult and that doing so makes me feel physically and mentally drained. He discussed it with another GP at the practice and thankfully they reluctantly agreed to refer me. I still have not had the appointment for assessment because the service is so over stretched that the waiting list is gigantic. Something I hope that will be addressed now that autism and learning disability have been made a priority for the NHS.

Even more frustrating is that when I took my daughter aged 13 to the GP to ask if she could be referred for assessment he refused. I was wrongly under the impression that it would be easier to encourage them to refer a child as they may still need support to help them through education and into adulthood. I wrongly thought the fact that she has 2 diagnosed brothers on the spectrum might help. But no. His response was “she just seems shy and maybe a bit anxious, see if there’s a counselling service at her school she can access” and basically laughed me out of the door. It was as if he was suggesting that he knew her better than I did from the 2 minutes he spent in the room with her. Why don’t professional listen to parents more!? I really don’t know why they ignore the person who has brought up the child and lives with them every day of their lives and think they know better.

I really don’t think that we are the only family that this has been such a struggle for. It’s as if they are saying if you don’t cause society a problem then we’re not bothered if you are struggling in your life as it’s only affecting you and not bothering anyone else. If you have got this far in life, then it can’t be that bad just carry on as you are.

If you can act normal on the outside when you need to and fit into societies ‘normal box’ then we’ll not worry about you or the damage this is doing to your mental health. It is not even (yet) medically acknowledged that masking autism and trying so hard to fit In socially has a major effect on the physical and mental health of autistic people even though so many people report this as an issue.

It’s just not good enough.

People need to understand themselves and why they feel and act in certain ways in order to feel at ease with themselves. If you don’t know who you are then how can you even be happy to be you? If you are autistic it has a huge baring on why you have certain feelings, why you act in certain ways, why you find some situations really hard and why you are anxious at certain time/in certain places. A diagnosis mean we can begin to make sense of all this and find ways to help ourselves as well as ways we can receive support from others. Without it we will continue to feel confused, helpless, like we’re failing, lose sight of our identity and have no idea about where we do fit into the world. We will only know that we‘re living in a world that we find increasingly difficult to make sense of and never really know why.