I feel it very important to try and document just how vital a service MAIN have been to both me and my brother since we came under their care beginning in 2020.

For the past five years MAIN have been a constant, supportive presence in both of our lives, and for us to know that MAIN have been there to help us navigate the difficulties and challenges we both face in daily life has not only been a  reassurance, it has been an absolute lifeline, especially as my brother and I are isolated within our community (an experience sadly not uncommon for Autistic people) and can no longer receive the much needed help and support of our parents who have both now passed away. Without MAIN my brother and I would be entirely on our own and we would be struggling to cope.

Since 2020 MAIN has provided my brother and I with the most understanding we have ever experienced in our lives because they are an Autism-specific service who understand the numerous and unique challenges Autistic people face in everyday life. They help us bridge the gap between ourselves and a society that is in no way catered towards our needs or experiences. For example – neither my brother nor I can properly access healthcare without the support and direct intervention of our respective support workers from MAIN. With our consent, our support workers from MAIN have contacted our GP and opticians for us, as we both struggle greatly with using the telephone due to our Autistic communication and sensory and information processing problems. This is just one example of how society is often inaccessible to us. Of how its systems, environments and ways of doing things are frequently unsuited to the needs of Autistic people. A phone call may seem a simple thing to most people, but it is a Herculean, frequently unsurmountable obstacle for my brother and I.

The fact that MAIN is an organisation dedicated to helping Autistic individuals is a crucial factor. In so many areas of life and society it is apparent that most people, while often well-meaning, have no real understanding of what Autism is and how it affects people – even healthcare providers often display a surprising, and frequently upsetting, lack of awareness.

A diagnosis of Autism provides you with an answer as to why you struggle as you do, but it doesn’t give you any indication of how to move forward. Ongoing post diagnostic support is absolutely vital in this regard. Again, I can’t adequately express how important a lifeline it is. I don’t mean to sound in any way melodramatic when I say this, but without the ongoing post diagnostic support from MAIN that we have both received since 2020 I am sure my brother and I would have been in a much worse place, and in the case of my brother, who has additional physical and mental health issues alongside his Autism I am not entirely sure he would still be alive. Or, at the very least, hospitalised.

I have consistently counted my brother and I lucky that Durham County Council has been willing to engage MAIN to provide Autistic people in the county with ongoing post diagnostic support. I know in some areas of the country no such service exists. Autistic people are effectively abandoned upon diagnosis, which is a terrible state of affairs.

I know as a council you will have many demands on your resources, but I feel it imperative to point out that because of the unique challenges Autistic people experience, our needs cannot be met by another, more generic “one size fits all”, service, who are not properly Autism aware or Autism specific. We cannot just “make do”  with another generic service as perhaps a non-Autistic person could. So many Autistic people find it difficult or impossible to access much-needed help because generally services do not properly understand the Autistic experience. We therefore are quite isolated, which frequently makes for an unhappy and unhealthy existence.

We need continued, specialist, Autism-specific support. Local mental health services have often let Autistic people down because they do not fully understand the complexities of the experiences of Autistic people. This is perhaps understandable to some degree as Autism is not a mental health issue it is a neurological developmental disability. But, because we cannot always adjust to their way of doing things they let us go. I know this from personal experience as I was discharged from mental health services a few years ago (against my wishes and without consultation) as they could not accommodate my Autistic needs. Thereby effectively laying the blame for failure at my feet. Thankfully, I was receiving help and support from MAIN by this point, but I fear how things would have been if I hadn’t. Because of this negative experience with local mental health services, I would be extremely reluctant to engage with them in future as I fear the same thing would happen again. This is another reason why the ongoing support of MAIN is vital to us.

Change and uncertainty are two factors that are very distressing and difficult to cope with for Autistic people. We need the security of familiarity, stability, continuity and routine to function in our daily lives and, once again, MAIN are absolutely vital to that.

Especially so to those people who “fall through the cracks” as I believe the saying goes – those who are deemed not eligible for social care but who still need support. I understand the need for criteria in order to assess support needs, but so many people do not meet that elevated criteria and yet they still need support to live healthy, fulfilling lives. MAIN are vital to people like this.

I don’t know if it is appropriate to single out individuals for praise, but everyone my brother and I have had dealings with from MAIN have been kind, patient, supportive, professional people – Lewis Meadley, Katherine Palmer, Pippa Robinson, Melissa Mallin/Massey, Kimberley Field especially. They all are a credit to the organisation and vital to mine and my brother’s wellbeing.

I haven’t been able to express my thoughts as well as I would have liked but I hope that some of what I have written will  be useful to you.

Thank you for all the help you have given me and my brother over the past five years. I don’t know what we would have done without it,

Louise

My name is Michael and I have been under the care of MAIN since 2021

I was diagnosed with autism in my 30s after a lifetime of being isolated, confused and constantly lost and overwhelmed I have found MAIN to be a critical resource on my ongoing journey to both understand and navigate how my autism presents and manifests itself. Without MAIN I would have no one to turn to with an understanding of autism and the awareness of how to help accommodate my needs.

MAIN has been more than just a point of contact. They have provided greatly needed advice and reassurance on many things. They have helped me to allow myself to be autistic after a lifetime of exhausting masking. They have given me a voice when I have not been able to speak for myself and are a constant source of support and care in a world I do not understand. They have helped prevent both me and my autistic sister Louise from being taken advantage of and being pushed into things that are not appropriate for us. Without them, we thought we had no choice and ended up exploited and distressed. They have helped me trying to manage negative behaviours and allow myself to explore being kind to myself and not be ashamed of what can give me comfort. I still find managing myself a huge struggle but MAINs support has reduced the amount of self harming incidents I endure. MAIN were vital in aiding me during an extremely stressful and upsetting PIP assessment. Without their support I do not know if I would have been awarded anything. MAIN have facilitated me accessing my GP several times, helping to get me access to needed medications and supplements. They have helped reconnect me with my doctors surgery and re-establish much needed physical monitoring for a long enduring eating disorder. Without them I had not been seen since the pandemic. MAIN were crucial in getting me access to the covid vaccine and planning a safe journey that would minimise my distress MAIN have spent a lot of time helping me to understand many things. I have had problems with understanding various bills and letters, knowing my rights, making important decisions and communicating them successfully, if at all.

I do not like to think of how I would begin to manage if MAIN were no longer accessible to me. They have provided the one thing I have never had in my entire life, respectful guidance, support and help with my autism, allowing me to slowly consider the notion that I am and can be a person of worth

I truly hope I have been able to convey how important MAIN have been as a service. Not just to me but to everyone they work with.

Thanking You