VoiceAbility | Autistic Pride: how advocacy helped Alex become 'more…
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Autistic Pride: how advocacy helped Alex become more authentically me’

15 June 2022

My advocate made me feel human and reminded me that I have inherent value despite my disabilities, sexuality, gender identity and economic status.

Alex, who used our services

Alex shares his experience of advocacy support from VoiceAbility, in his own words.

When I first got put in touch with my advocate from VoiceAbility I was at a very low point in my life and felt vulnerable, helpless and unmet. I had been I felt unsafely discharged from Mental Health Services, had no local support network and had received no advice or support since receiving an ASD diagnosis at age 32. To top it off the COVID pandemic had hit which hugely increased my anxiety, and led to heightened uncertainty and isolation.

Feeling unseen and desperate I contacted HertsHelp to try to navigate a way to get the right support and advice, and they referred me to VoiceAbility, who linked me up with an advocate.

I was so anxious regarding my first appointment with my advocate Klara, and had been in services, including inpatient settings, for so long that I didn’t even have the confidence to meet with her on my own for the first time, so my dad joined the appointment. Klara was friendly, encouraging and understanding, which made me soon feel able to meet with them by myself. 

Klara was great at helping me to process the reality of my situation, and the different options that I could investigate to get the support and advice I needed. They also gave me lots of different options to explore together, and were creative in coming up with possible solutions to my ease my problems, which to me seemed unsurmountable and my situation hopeless. 

My advocate worked to empower me to communicate my needs, and together we have done a variety of pieces of work which have had life-changing outcomes.

I made a Subject Access Request to substantiate a complaint to the local Community Mental Health Service and received an apology, and am now equipped to continue to advocate to get my mental health needs met. In addition, I applied for a Social Care Assessment and was awarded a Direct Payment to support me to live my best life. 

More recently, Klara supported me to prepare a Reasonable Adjustments Passport to communicate my needs to the job centre, after I became unemployed due to ill health, and supported me to advocate for myself at my appointment with my job coach. This resulted in unbelievably positive outcomes and a good experience at the job centre going forward. 

I am still having difficulties getting the right diagnoses, mental health treatment and support; but am now better equipped to advocate for myself and able to ask advocacy services for support when I need it. Overall, the advocacy support I received has resolved a lot of issues I have had and as a result I am more authentically me, am living a much more fulfilling and less isolated life, and feel happier and more confident. 

I am now working full time, helping others with disabilities move into work, and have the best weekends exploring in the camper van or going to gigs with my Direct Payment-funded PA.

My advocate made me feel human and reminded me that I have inherent value despite my disabilities, sexuality, gender identity and economic status. I was reassured that I should have my needs met and be treated with compassion and integrity and not discriminated against due to my diagnoses and protected characteristics; this meant a great deal at a time when I felt very small and uncared for. 

I will be forever grateful for the support my advocate provided, for the physical outcomes and for the changes they helped me to make in my own life, in my attitude and increased self-worth. I feel the future is bright now and that when challenges occur, I am better equipped and can ask for help from an advocate if needed. 

Thank you, thank you, thank you.

Names have been changed.