Support

When I was first diagnosed with autism, I briefly had some support. Mainly a social worker. Thanks to the pandemic, all but the most severe cases were dropped. Understandable, but not ideal for me. The time when I needed support the most, was the time that I felt neglected. In addition, the way that support was offered when it resumed, did not help as I felt that I had to fight to get what were standard services. I have spent a lot of time being angry at the system for failing me, it hasn’t been productive. Instead, I’m starting to look ahead, and take a look at what support I have managed to access.

During the pandemic, I chose not to contact the doctor unless I was in a crazy level of pain. They had more important things to do during that time. I ended up loosing at least two teeth and just consumed all the painkillers I could find. Toward the end of the pandemic, I decided to push the need for support to understand my autism and how it has impacted my life. Diagnosis as an adult is often more challenging than a childhood diagnosis, as it puts into question almost everything that happened before the diagnosis.

After pushing the doctor, they eventually referred me to PCMHT (Primary Community Mental Health Team), who provide mental health services locally instead of hospital related services. Changes were made to my depression medication, and I was allocated a therapist. While the sessions themselves were not terrible, they did not factor in my autism and left me feeling a little disenfranchised. However, the therapist did make additional referrals. I was referred to the PCMHT nurse, who is now working with me to help break down barriers when it comes to getting out and about, as well as how I can put in place more effective coping strategies. I have also been allocated an Occupational Therapist. They will help look at ways to develop new skills, as well as looking at how I can modify existing tasks to make them less draining when I am having a bad day. I have also referred myself to IAPT (Improving Access to Psychological Therapies), who will be able to help provide appropriate psychological support.

All the services I mentioned above are short term. On average, there are only six sessions (although extra sessions can be added if needed). While they are useful, they are not the long-term support I feel I require. A carer who can help me when things are difficult, or who is able to explain things to healthcare and government agencies, would be much more useful. Even if they only came in once a week, to keep track of things. How I go about getting someone like this, I don’t actually know. I can’t afford a private carer and the role is not something that can be easily done by friends. It may be possible that I will reach a point that I don’t need a carer, only time will tell on that front. 

Still, the current support I am getting is leaps and bounds from the levels I got when the pandemic was considered over. Sadly, I feel that getting the support I require will be an uphill battle for quite some time to come. Currently, the best I can do, is appreciate the support I have, and take full advantage of what each support person has to offer.