It would help late-diagnosed autistic people hugely if, upon receiving diagnosis, the diagnostician would just be honest, even brutally honest, and tell the truth - there is no help for you, you are on your own, again, as usual. That may sound cruel, not least because it tells people who are often on their own and sinking that they will remain on their own and more than likely sink. But it is infinitely superior to raising false hopes only to have autistic people drain their time and energies seeking a help that isn't there. The AS Report you receive upon diagnosis comes with a list of links and resources to explore at the back, giving the distinct impression that help and support is available. Contact any of these organisations and you will find them extremely slow to respond, two to three months a time. And then as you explore what they have to offer, the horrible truth starts to dawn on you that they have nothing other than advice on how best to help yourself. Time and again I was advised to do things I have been doing my entire life. Autistic people who are undetected and undiagnosed will, quite naturally and instinctively, develop coping and survival mechanisms. All these organisations teach are a few extra techniques which enable autistic people to come out of their shells in the attempt to participate in the social world. That's fine as far as it goes, but it never goes so far as to require change where change is badly needed - in the wider society of unknowing, uncaring, and uncooperative others.
I wasted a year or more after diagnosis pursuing any number of false leads, becoming increasingly frustrated, dispirited and frankly depressed at seeing hopes falsely raised in the first place being cut down one by one. The strain and the stress was unbearable.
Forewarned is forarmed. These AS Reports need to dispense with links and resources that raise false hopes but lead nowhere but frustration and a pervasive feeling of futility. If such links and resources are to be provided, they should be accompanied with a clear warning that these things offer so much (as in so little) and nothing more. It would be a good idea if, upon receiving diagnosis, a follow-up meeting is arranged in which the newly diagnosed are briefed as to what they can expect. Newly diagnosed people are repeating the same story - the shock, the frustration, the pain, the misery at spending a year and more in search of a help and support that diagnosis had promised. The help and support that the newly diagnosed seek is not there. The worst part of false leads and promises is not the waste of time and energy, as scandalous as this is, but the raising of hopes only to have them dashed. The loss of hope inflicts enormous psychological scars that can lead autistic people to lose all hope and sink in a pit of despair. Alone, in a dire situation that seems beyond remedy, all hope can be lost. If diagnosis changes nothing, then what?
I'm a strong believer in teaching self-advocacy on the part of autistic people, of forming mutual aid societies which pool key information and resources, putting often isolated people in contact with one another, enabling autistic people to know their rights and know how to assert them. Lack of information, lack of contact, and lack of confidence blight autistic people, who too often slink back into lives of cruel hopeless isolation. I believe we need to create an autistic grassroots powering change from below, giving overarching national bodies like the National Autism Society real social democratic content, force, and legitimacy.
People who are late diagnosed repeat the same tale over and again. After being diagnosed they thought they would be able to access the help and support they have lacked their entire life - they thought that the days of struggling against the odds would be over. They find that there is no help and support beyond advice on self-help, and that their struggles have continued and will more than likely continue for the rest of their lives. And if that doesn't make heads drop, I don't know what will. One person told me that she learned that you have to be prepared to "fight, fight, and fight again!" The problem is, however, that the late diagnosed will have spent a lifetime fighting this endless war and will more than likely be in a state of mental and physical exhaustion. Many will have developed a number of chronic illnesses grace of these constant struggles and the relentless anxiety that accompanies them. Many will have little fight left in them. They have fought long and hard and are now looking for help and support. Having fought alone for so long, it is the least that autistic people can expect. But it seems their expectations will be dashed. If I didn't know any better I would say that the attitude of the authorities is that it is too late for the late diagnosed, they are unproductive burdens on society, more trouble than they are worth, and therefore not worth wasting scarce resources on.
Late diagnosed people tell tales of asking diagnosticians what support resources will now be available after diagnosis, only to be told there are very little, as in none! It would have been better had I been told that in the first instance rather than wasting the next year and more involved in a succession of wild goose chases, all the time losing not merely false hopes but all hope entirely. I contacted the Integrated Autism Society. I sent them a letter explaining my dire predicament - problems with mental and physical health, loss of employment and income, uncertain shelter, isolation, a lifetime of struggle without support and more besides. I was given a form for referral to complete. I went into great detail, making it clear that I was in desperate need of help and support. It took two to three months before I received a telephone appointment. We went through a Q&A 'assessment' which was designed to test how well I was coping in areas such as cooking, cleaning, self-care, stress management, mental and physical health, communication, social interaction etc. In one area after another I received scores of 8+ out of 10! I was told I was doing great! What that assessment meant was that, in terms of all the self-help recommendations which is all the IAS had to offer, I was doing all I could. I know. I've been doing it my entire life. And it isn't remotely enough, hence the parlous situation I described in my letter and on the referral form.
There's nothing. 'Society' is empty and could care less. The various bodies and organisations that are out there offer advice and resources for individual autistic people to access, explore, and use to the best of their abilities. But that's it.
I've been given contact details for a local group of autistic people. It took me one and a half years of digging to be given that nugget of information. One person comments "I was given just a couple of meet up leaflets for the local area and told 'it's on you to find the rest now. Good luck!'" I would rather have been told this from the very first as opposed to being given a list of links to organisations and resources to waste my time exploring in search of non-existent help and support.
There is good support online from other autistic people. I'd just be careful of notions of an 'autistic community.' Autistic people come in all shapes and sizes. It is probably best to find your own sub-group within the wider 'community.' The needs and experiences of late-diagnosed autistic adults will be very different from children and adolescents.
In fine, the situation is less than ideal. In fact, it seems designed to plunge autistic people into paradoxical situations that cannot but intensify the anxiety problems they have. There are accommodations and services that one can access — you just need the executive function you don’t have in order to do the necessary research and put them all in place.
The rather boring conclusion, which tells us nothing we don't already know, is that the only thing we can control is ourselves. I didn't need a diagnosis of autism to tell me that! I was told that very same thing by one employment agency after another in a desperate search for a job that fitted my skills, interests, and qualifications. Politics, macro-economic policy, societal change etc, everything pertaining to the collective environment, was deemed beyond intervention and alteration - change was entirely and 100% a self-change. The nadir of this advice came at A4E, when a group of graduates, including a mathematician who had worked in developing the JavaScript programme, a PhD scientist, a biochemist, and a linguist, were told that should clean toilets if they had to. Why bother with education and training? If you are told to dumb down your CV, why not just be dumb?
I've done plenty of self-changing. Autistic people can spend their lives changing themselves in order to fit society. I've self-changed myself to exhaustion.
But, yes, there are things you can do to find ways to manage your life, achieve emotional regulation, exercise self-discipline, find joy, appreciate grace, express kindness, explore your curiosity, maintain boundaries, attain wisdom ... I spent years pursuing my interests to earn a PhD in philosophy.
It's not enough. Things don't get better, they get worse as a result of spending a lifetime living in uncertainty and anxiety and all the trauma this brings, only to receive a diagnosis which brings not help and support but yet more uncertainty and the knowledge that the battle rages on. This time, however, you know for sure that no one is coming to your aid.
I'll just end with this image from World Autism Acceptance week.
I agree entirely with this message, hence my critical comments on the almost exclusive emphasis on self-change above. I would just say, Alex looks impossibly young to be using terms like 'spending a lifetime.' But that's what the stress and trauma of constantly fighting the odds and having to fit a world that seems ranged against you does to you. I was exhausted by 21. When you get beyond exhaustion you are in the territory of chronic illness and near fatal heart attacks. Reason enough for help?
Autism Acceptance! Society needs to change!
