Hello - Please help me to represent the Autistic community

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Holly - Moderator

  • Hello Angie, this sounds very promising. I’m a 50 year old who was diagnosed last year and will be embarking on the masters in autism followed by a PhD and will be following in your footsteps to some degree. This is great news. While attending the job centre is challenging for me, I have had nothing but full support from them. I was freaking out on my first appointment when they told me I had to look for jobs. I told them straight, no way, I must be in the wrong place. The woman, who has worked with autistic people in a previous role, brought the manager of the job centre over to reassure me that if I got a sick note, I wouldn’t have to look for a job. I also said that when I’m ready for work, I also refuse to be pushed into any old job. Again, the manager reassured me that that would never happen. She told me that things have moved on and that they have their own dedicated team who work specifically with helping disabled people included autistic people, to find the right work for them.

    I’m self employed so don’t need their help to find work. I do need help in setting up my own business, but as far as I’m aware, they don’t have the facilities to help me with that. They put me forward for the enterprise scheme or something, which didn’t really provide the help I was looking for. For me, I need specific support to get my business up and running. This is not because of my inability to do an excellent job, but because of executive functioning etc. I need to be taken through the process step by step. With me, a little help goes a long long way and often, the help I need is something an nt would be able to do easily so they are often able to spot things and help me in a big way by spotting the small things I’m missing. But they will only be able to spot those things if they treat me with total unconditional positive regard. By recognising and acknowledging my autism but seeing beyond that. I need to feel safe enough with that person to ensure that I’ll open up with them and be honest enough to let them know what I can and can’t do. It’s like this information can only be teased out of me over a series of sessions. They need to get to know me first and on every step of that journey I will test out a little more each time if my last time opening up was successful. I can’t be rushed. That just increases my stress levels and shuts me down, then I’m no good for nothing. I need to know that they genuinely want to help me. They have to be passionate about their job to help people and not just tick boxes. If they give me all this, I will be a success and they can showcase me to show how they can help others. I will give back more than they give me but the support I need is specific. I need a balance of them bringing out of me what is dying to jump out, with some gentle guidance that doesn’t set me up to fail. The worker needs to know that it might be a case of trial and error and that sometimes we might get it wrong, and that’s ok. I need positive reassurance but that reassurance will go a long way. I have to take baby steps, without feeling like I’m a baby. I need support but I need empowering as well. I know that there are many autistic people out there with incredible, unusual and dying gifts and talents. They simply need to be matched in a way that they can use their gifts in a way that enriches their lives. Working and being independent in a way that only money can provide, is a vital element of our overall level of health and wellbeing. We are meaningful people. What we do has to have meaning for us in a way that we can understand. The support we need is out of the box but it can be surprisingly easy to provide if we are treated with dignity and respect and not like some number they need to get off their books. We are not looking to fill positions but to fulfill our own needs by using what we have, what we’re good at, what we enjoy and what we can build our lives around. Work takes central position in most people’s lives. If it’s going to work for an autistic person it has to hold meaning for them. Most of us are undemanding, we are happy with simple lives, we are happy with our special interests and at being the best we can at anything we take on, that has meaning to us. For me, I have to have confidence in the person who’s helping me, I need to draw on their confidence until I find my feet. I don’t know if I’ll get the help I need but one way or another I have to, because I need some help. I’m not useless or hopeless by any stretch of the imagination but my natural tendencies to not want to wash and dress and do the normal daily routines, when meaning or purpose is lacking, makes it a struggle to work out the steps I need to take to get me back into work etc. I’m currently coming out of a burn out which is a crucial point for intervention, to get the help I never had as a kid growing up with undiagnosed autism. Just because I’ve been in burnout, doesn’t mean I can suddenly do the things I’ve struggled with all my life, such as eating, social contact, obsessions etc etc. It means I can work out ways of working with these things but I also want to move forwards in my life. To build the business I know I’m capable of making a success.

    If I leave my house, for me to be comfortable and navigate all that that entails and to avoid a meltdown, it has to be for a reason that’s meaningful to me, otherwise, it’s barely worth the effort. I will feel like I’m leaving my house just to please somebody else and that’s not sustainable, that’s why many of us break down, round about the mid life point. We hit a point and can’t go on anymore. For me, it’s all about meaning, taking care of my sensory needs, my need for solitude, regularity and feeling safe in the world. Leaving my house is otherwise when the battle begins. My own thoughts will have me crucified before I even open the door so already my senses are on high alert. What I can cope with one day can floor me another. But these are things that nobody sees and especially because I’m so good with the mask. It will barely leave me if I don’t feel safe. It’s my armour, my protection, but it’s not me. There’s more to me than that. That’s my battle attire. I need to feel safe to move beyond that.