I recently met a man who has just been diagnosed with ADHD. He is in his mid-40s and is experiencing something that is common in most adults receiving a late diagnosis: the Great What now?
Achieving a diagnosis is difficult, and the process is intimidating and stressful. After years of torment and confusion you might expect a diagnosis to offer some form of closure, and to be the answer to everything. Unfortunately, that is rarely true, and coming to terms with a diagnosis is just another part of the journey to discovery.
Diagnosis is essentially a letter, (or an E-mail!), which confirms what you probably knew all along. It is medical evidence that you have and have always had a condition over which you have little control. For children and some young people, a diagnosis opens doors to support groups, counselling and extra support in education. For adults…nothing. A recommended reading list at best.
For me, accepting a diagnosis of autism has been harder than realising I should pursue one in the first place. I vividly remember feeling upset and overjoyed in equal measure. I was happy that I finally had something which explained so much, yet scared that I had something of which I knew so little. I then began to doubt the authenticity of the report, wondering whether I had been given a positive diagnosis simply because I had chosen to go private, and had paid thousands for the privilege. Had I bought my autism?
I felt angry that it hadn’t been picked up sooner, and resented so much from my former years. I hated myself for not doing this years earlier, and felt so alone. There was no one I could talk to who would genuinely understand what it is like to be on the spectrum. I was so fortunate to have my partner, my children and some close friends. Without them, I don’t think I would have made it through this quickly, if at all. So what now? What do you do with a diagnosis?
You need to make it a priority to learn as much as you can about the condition you have. Read as many books as you can and make use of websites and blogs written by others who have already dragged themselves along the route you’re on. Until you truly know yourself, your strengths and weaknesses, you will not be able to move on. Acceptance is very much the key.
Initially I felt embarrassed, even ashamed of my diagnosis, but as I learnt more about the condition, I began to view it as a strength and something to be proud of. There will always be people who question or downright disagree with your new diagnosis, but you need to ignore them, however hard that may be. They haven't got a clue what you have been through. Sure, it might look strange to suddenly have a condition of which they were oblivious, but you will always have felt different. You will needlessly have endured so much because neither you nor anyone else knew what was going on. Now you know exactly what is going on and you need to share the news!
Making people aware of your condition is a huge deal. You may choose to tell a handful of important people, or you may opt to shout it from the rooftop. There is no right or wrong way to go. I told my closest friends and then my line manager at work. Everybody was so kind and accepting, and the best thing was that nobody treated me any differently. I let my headteacher know as it is useful to disclose the diagnosis to your employer so that reasonable adjustments can be made in the workplace.
True acceptance of your condition will make you feel empowered, more confident and more energised.
Eventually (and it is a LONG process), you can try to tick off some of the things you have always wanted to do, but never felt brave enough or capable enough to conquer. I bought a T shirt last year with the slogan “Autism is my Super Power”. I really think it is. Obviously, I have down days and I always will. I still have lows when I cry, hate myself and feel that I cannot cope, but these do not last as long as before, and are rarely as bad as they used to be. However, I have achieved so much since diagnosis. I ran a half marathon in aid of the National Autistic Society (I never thought I could do that!), I have managed to change my job after 17 long years, and, top of my list, yesterday I married my long-suffering girlfriend of 27 years.
Along with new found optimism and a desire to make the most of life, there must also be an acceptance of our limitations. I am well aware of where I struggle and of what things I find challenging. My wife and children also know when I am going to find something difficult, and will help me to get through any tricky situations such as finding somewhere to park the car or coping with a busy or crowded venue.
Knowing the key “symptoms” of autism and understanding how my autism works, I am able, along with my family and friends, to pre-empt when I will encounter issues and can do something to minimise them. This could include simple steps like not sitting under or by bright lights, arranging to meet in the car park of a venue as I find it hard to walk into new places, and not expecting me to always join in with a conversation. Knowing that others have got your back and want to help you, makes you feel more relaxed and increases the likelihood of success.
So to those who are asking “ What now?” I simply say yes. Now is when you make those changes to help you to get on with life and to make the most of every day. Now is going to be better than any time before. Now is not a new you but a more prepared you, who knows you better than anyone, and is no longer worried about letting others in on what’s going on deep down. Now is a time and a place where you are ready to encounter challenges with a smile and not beat yourself up when things go wrong. Now is your time to be yourself everywhere and anywhere.
AWARENESS : Find out as much as you can about your condition. Just because you have lived with it, does not mean you understand it, or how it affects you. Also, make others aware of where you may need support.
ACCEPTANCE : This isn’t going away and you need to learn to live with it. You and others around you need to accept there will always be areas where you encounter issues, and there may well be things which will always seem too daunting.
ANTICIPATION : As you learn about your condition you will be able to recognise triggers and know in advance how you will react to certain situations. This is essential as you can limit the number and severity of shutdowns and meltdowns.
ACTION : Unfortunately, whether the diagnosis will have a positive impact upon your life is down to one person – you! Set yourself aims and do your best to achieve them. Try to come out of your comfort zone when possible and reward yourself for even the smallest accomplishment.
Good luck xx
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