Monthly Archives: April 2017
by Monique Craine
I thought I should draw up some basic guidelines which I have found to be commonly desired by members of the autistic community.
Please follow these ten guidelines if you want your awareness campaign to gain the support of the #ActuallyAutistic community
1 – Do not allow Autism Awareness Month to be about pity and/or fear of autism. Autism awareness is not about increasing parents and professionals interpretations and views of Autism. It is about increasing awareness of ‘Autism’ itself. The #ActuallyAutistic adults who have a lived experience of autistic differences are the true experts and are the best people to help raise real awareness.
2 – Do give autistic adults a platform to express their experiences of the kinds of barriers autistic individuals are likely to face. Allow the autistic community to present the messages they want going out for autism awareness so that autistic individuals are allowed to embrace our different neurology. Do not use our need to be heard as a means to exploiting autistic talent to raise funds for your ‘autism’ causes. Value their contribution as you would any professional, especially if you are using their talents to make money.
3 – Do NOT Light it up Blue for autism. The Autistic community do NOT generally speaking support Autism Speaks. To many of us they are no more than a well funded HATE group working to eradicate us from the gene pool. Lighting it up Blue is an affront to many #ActuallyAutistic individuals. We tend to prefer GOLD as it is our Au symbol of acceptance. If you have to light it up then any colour other than blue will do. There is a whole spectrum to choose from
4 – Do talk about how our different neurology impacts our ability to function to societies expectations and be a true ally in helping us get the kind of accommodations autistic people are telling you they need. We are being failed in all settings; from schooling to our mortality rates. We need people to know how to better accommodate our needs so that we can live more productive and healthy lives. Use this time to tell society how they can better account for our different needs.
5 – When responding to computer literate autistic adults do not compare the Autistic adults to your Autistic ‘children’ no matter how severely the child is impacted, no one actually knows what that child will achieve by the time they are the adults age, and the person you are talking to may have presented just as severely at the child’s age.
*No one ever compares non-autistic adults to children it is rude and dismissive of our lived experience of autism and anyway, unless you’re our actual mums don’t assume you know anything about our childhood.
6 – Do NOT talk about autism as though it is an unsolvable mystery or a puzzle piece, as that implies we are a lost cause, or missing part of the big picture. In our eyes the only piece missing is that we are not valued and accepted for who we are by society. In view of this never put an assumed monetary cost on an individual who has not had their needs met. When society INVESTS in the autistic community the costs of ‘autism’ will fall. No other groups of disadvantaged, marginalised citizens are generally discussed in terms of costs, well what can we say? Just STOP doing it please. You should not put a value on our lives just because we happen to be autistic.
7 – Do NOT talk about ‘fixing’, ‘treating’ or ‘curing’ AUTISM. There is NO cure for Autism and we don’t want to be ‘treated’ for our autism by people who obviously do not understand how our different neurology actually impacts us. Autism is an integral part of each and every autistic individual. Our autism cannot be removed without destroying the thing that makes us who we are. So when you ‘fight’ or try to ‘beat’ Autism you are perceived as aggressively wanting to harm us. We ARE autistic and want to be able to discuss our different neurology without judgement from people who want to destroy part of it.
8 – Do not grant a platform for the promotion of Applied Behavioural Analysis (ABA), it is NOT a treatment for autism which is recommended by anyone other than Behaviourists. ABA is a profit making enterprise, preying on vulnerable parents who we want to protect. Many of the autistic community view ABA in the same way as the homosexual community and their supporters view ‘Gay Conversion Therapy. Please don’t endorse it this Behavioural approach if you want our support. We can help you find more respectful ways to help your child progress.
9 – Do not allow a platform for the anti-vaccine movement, and alternative medicine quacks. There is no ‘alternative’ to real medicine and there is no link between autism and vaccines so your choice is simple. Either you are promoting pseudoscience, quackery and unregulated experimentation on autistic children, and adults OR you support autistic people. It’s as simple as that.
10 – Do NOT confuse autism with the other commonly co-occurring neurological differences like dyspraxia, epilepsy, OCD, ADHD, etc. Autism is a benign neurological difference which is not responsible for everything autistic people can struggle with. What people actually need is more knowledge about commonly overlapping and co-occurring Neurodivergent differences. Autism is just autism, it does not make you Learning Disabled, in fact many of us have high IQs. Autism does NOT cause seizures, that is epilepsy and does need to be medically monitored and in many cases medicated. All autistic people are different because of how our complex ND natures interact with our other co-occurring differences.
I would like to ask that all who support these guidelines please add their voice to this thread so that come April 2018 we can request organisations light it up GOLD for Au acceptance and with our full support and cooperation. Please let society see that the autistic community speak with a pretty united voice.
We can re-appropriate Autism Awareness to something #ActuallyAutistic people can support and celebrate.
by Joseph Redford.
The situation for many autistic people in the U.K. today is dire. We have incredibly high rates of unemployment, isolation, exclusion, bullying, depression and anxiety. Social attitudes towards autistic people are changing at a glacial pace, while myths and misconceptions spread like wildfire. None of these problems have easy or even obvious solutions, which is why they need to be approached from as many different angles as possible.
Unfortunately, there seems to be a tendency for autistic people to devote more energy into policing their own side rather than finding solutions to the predicament of the autistic community. The biggest divide seems to be between so-called moderates who think working with the current authorities is the best way forward, and “activists” who think attacking the institutions and lobbying them is the best way forward. “Moderates” attack “activists” for being too aggressive, and “activists” attack “moderates” for toadying.
Both sides police each other’s language, attack each other for not being ideologically pure enough, and attack other autistic people who say things that fall outside of their paradigm. I think there is enough space in the autistic community for both groups to co-exist, and both groups can make change in their own ways. The people who are the real problem are the ones who try to impose ideological uniformity on the entire autistic community, and attack and censure people who deviate from it, and use all their energy to try and maintain an increasingly shaky status quo. So my message to you, dear reader, is if you have an idea to help autistic people, speak up and put it forward. If you think it’s silly, unworkable or offensive, put it forward anyway, because it could turn out to be a way forward after all. Put forward your idea, and Autistic UK will work with you to make it a reality.
by Marion Hersh.
Control is important to many autistic people and we do not want to give it up to professionals and experts. I, for one, resisted formal diagnosis for this reason for many years until the need for reasonable adjustments became even more pressing.
Currently, diagnosis acts as the gate keeper to support and adjustments. However, in practice not a lot of support is available post-diagnosis. This is clearly wrong. Access to support should be made much simpler and the amount of support available should be increased, in consultation with autistic adults and young people, so it is useful. In addition, I would suggest that membership of autistic organisations should not be dependent on diagnosis. It seems unlikely that others are going to want to gatecrash them and mechanisms for preventing this could be developed if it becomes necessary.
However, self-diagnosis requires both information and self-confidence, so it is not an option for everyone. There is certainly a need for more information about autism to become generally available, but this will still not make self-diagnosis possible for everyone. This is particularly true in the case of children. In theory, a diagnosis could lead to additional information about the person and the barriers they are likely to encounter, followed by a personally tailored set of strategies and support measures to overcome them. In reality this is rare to non-existent.
Although, like everything else, professional diagnosis is not infallible, it can be useful in the case of challenges based on other people’s stereotypes – you’re not autistic, you can’t be autistic – you can read, speak, have a job, partner, house, life, you’re too responsive, you’re not catatonic, not totally incapable (or whatever the particular stereotypes are) how can you be autistic. Producing a formal diagnosis is much easier than having to explain away all the stereotypes. In addition, this diagnosis can then be used to support your arguments challenging the stereotypes and showing the diversity of autistics.
The lack of support post-diagnosis is not unique to autism, as my research on the experiences of blind people in different countries found. Symptomatic of this lack of support was being given a long cane (white stick) and presumably being expected to know how to use it, though this requires many hours of training. However, the post-diagnosis situation for blind people is changing. In addition, many countries have organisations of blind people controlled by blind people. For many of my research participants going to organisations of blind people, hearing blind people there laugh and joke and seeing they had a life was a turning point.
Something similar would be possible for autism. However, it is going to take time and resources before each town and city, possibly even each village has an autistic controlled and led organisation, which, amongst other things is able to provide information and support to those who have been newly diagnosed.
by Willow Holloway.
I connect a lot with parents who are going through the diagnostic process with their child. Many are very frustrated with the current system and the long waiting lists and even more disappointed with the post diagnostic support. As a parent after you have been through the diagnostic process with all the stress it entails and then finally after many months your child receives the diagnosis of an Autism Spectrum condition you assume that there will be ongoing support. Too often parents are left to deal with the post diagnostic period alone.
There is a sheer mountain of research and an even bigger mountain of mis-information
Many parents obsess over finding answers and changing the system during this stage these emotions in time can begin to fuel fear and anger. Anger at an unaccepting world, at the system that makes little adjustment and at themselves for not having the answers. It’s no wonder that so many parents see Autism as a negative thing. They are left to deal with the emotions of sadness, grief, guilt, self-blame, self-recrimination, and fears and worries about the future alone.
What a difference a compassionate and empathetic response post diagnosis would make. Being given the ability to meet autistic adults who are happy to share their experiences. A friendly face reaching out a hand with the ability to share knowledge gained and make the road ahead seem less scary. This sort of support can insure that a diagnosis becomes a positive rather than a traumatic experience.
Many of the parents I have connected with express the fact that they are fed up with unhelpful advice from people who have no understanding of autism, neurodiversity, sensory issues, or behaviour challenges but who still believe they have the right to tell them the best way to parent their child. They are continually having to fight the system to get the support their child needs. It’s no wonder that the parents of autistic children are overwhelmed with stress, and in turn this just stresses their child. Which just amplifies the chances of “challenging behaviours” developing and eventually stress related health conditions. We can just as easily be overwhelmed by others’ emotions as we can sensory input from light etc.
The initial stages after diagnosis can be extreme for everyone, I know, I have been there on more than one occasion personally and as a parent. My advice post diagnosis is simple forget the research for now. Try and let go of all the unhelpful advice. Take time to process what you have been told that was useful and then move on and work out the best way to go forward for your individual child. Your Beautiful and Unique child.
Many parents I have spoken to have expressed their frustration at being unable to get any help for their child because their child has been refused a referral for a diagnosis or they are stuck on a list somewhere in the system. My advice. Persevere, you know your child. Treat your child as if they are already diagnosed. You don’t have to have a diagnosis to begin putting in adjustments. Implement coping strategies. Learn about their individual difficulties and take time to understand those difficulties, don’t focus on the behaviours, focus on what is leading to those behaviours.
Most importantly in my opinion take time to listen to autistic adults and ask them questions. We want to make life easier for you and your child. Ask us about what we needed as kids and what strategies we had to learn. We want to make things easier for the next generation by sharing what we have learnt.
by Marion Hersh.
You’re in a strange environment where you do not really understand what is happening and you are trying to do something that you are finding difficult. And you are starting to feel stressed. And people are coming up to you and hitting you on the head. They are not hitting you very hard and it is not all the time, just every few minutes. It is not life threatening, it is not going to cause brain damage or serious injury, but it is upsetting you. It is starting to really, really, upset you. And you are finding it more and more difficult to do the thing you are trying to concentrate on. And you are starting to make mistakes and having to repeat things. And you are becoming more and more stressed.
You try not to think about it, but all you can think about is the next time you are going to be hit. And you are becoming more and more tense waiting for the next time. And you know it is not going to kill you or even really hurt you, but that does not help. You think about saying something, but that is difficult – you need to think what you are going to say, open your mouth, formulate the words and get them out and that is not easy to do. And all the time they are beating you on the head and it is getting more and more difficult to think.
But it can’t go on, so you force yourself to put some words together and open your mouth and force them out. You’re not sure you’ve got them quite right, as you are no longer able to think. And everyone ignores you and keeps on hitting you. So you make another big effort and repeat what you said, louder and louder. And then they say, what are you making a fuss about, no-one else here minds being hit on the head. Who are you that you should be treated differently?. And they might get upset if we stopped hitting you … And by this time you are feeling really, really, stressed and you are screaming and jumping up and down. And they are saying get that strange person out of here, out, they can’t behave properly, we want civilised people. And they are saying … , but you are not understanding them any more, you are feeling so stressed and overwhelmed. And they push you out, so you cannot do whatever it is you were trying to do, but they still keep on hitting you …
This is what life is like for many autistic people. Sensory overstimulation – noise, light, movement, smells, the presence of other people, physical contact, crowding … – can be totally overwhelming – and when we try to say something the reaction is often, what are you making a fuss about, no-one else is bothered?
by Graeme Stickings.
With the stereotypical view of autism, many will go to the alleged triad of impairments, lack of social imagination, poor communication and poor social interaction. (I know the triad is disputed, but we are referring to a stereotype). However, there is one aspect of life on the spectrum that not many neurotypicals will consider, but can affect us deeply, sensory issues. This is where one of our senses is either hypersensitive, (heightened) or hyposensitive (dulled).
In my experience, it is when a sense is hypersensitive that problems usually occur, as something that a NT will go through without thinking or paying any mind to, can cause serious discomfort or pain to one of us. My sense that I believe is heightened is my hearing. There are many sounds that NT’s can tune out and ignore, not so me, I hear them all. Sometimes they can be painful, like the fire alarm test at work, or children screaming at church when they do running races, other times they are distracting. Try sleeping when you can hear the fridge and the freezer from the bedroom, along with the storage heater and a DVD / Video / Recorder doing something at around 01:00 or even the cable box. You can live in a constant wall of sound. What I find frustrating though is when a NT tries to tell me something when there is background noise they don’t notice and I can’t hear, and then when it is quiet and I can hear them whisper, I am accused of selective hearing!
Of course, along with the lines of once you know one autistic person you know one autistic person, other people with an autism diagnosis have problems with their other senses. Temple Grandin has to wash all new clothes before she can wear them, and in our own organisation one member reports they have accessibility issues with their computer and so switch off all graphics when using the internet, could this be hypersensitive vision?
Hypersensitivity can be a really big issue. Hyposensitivity can also be an issue whereby certain warning signs given by our senses are not received, but I suspect that maybe more of an issue with children, although I will stand corrected on that.
So, when we make people aware of the challenges of being autistic, we need to show the NT’s it does not start and end with the infamous Triad of impairments. Some of us have senses that are strictly not impaired, but enhanced beyond the acuity of the Neuro Typical.
by Marion Hersh.
For me, the horrendous situation of the overwhelming majority of autistics is part of a much wider problem. Structural discrimination and disadvantage are unfortunately embedded. Money rather than caring is the dominant ideology and the industrial-military complex has much too much power. Bureaucracy with impossible rules, assessments and forms are used as weapons to keep people from obtaining even minimal financial entitlements. Most minority groups are excluded, discriminated against and disadvantaged to a greater or lesser extent. Autistics are also members of other minority groups and therefore many of us experience multiple forms of discrimination and disadvantage.
Achieving lasting and significant improvements will require changing the structure of society, amongst other things overthrowing capitalism, patriarchy and bureaucracy. This is unfortunately not going to happen in the short term. I will therefore leave my suggestions for the more human, animal and planet centred approach to replace them for another opinion piece, and make some suggestions for some shorter-term changes.
One option (and I have no idea who came up with it first) is a universal sufficient income for everyone over sixteen (or possibly younger). It would not be means tested, capability tested or require filling in forms. Everyone would get it and it would be claimed back via taxation for people on high incomes. There could be supplements for people with additional needs, due to, for instance, disability or having several children, and a simple process to obtain them. This would give autistics and others currently living in poverty financial independence. It would also make it much easier to move into and out of employment, as you would not risk losing benefits, or work for only a few hours a week, as you would have a sufficient income.
Another and probably more difficult change, as it would require big changes in attitudes and behaviours would be the creation of large sensorily quiet areas. There would be a few smaller areas where noises of different types (smell, visual, movement and crowds, as well as auditory) would be permitted. This is analogous to the change of attitudes to smoking, which has now been banned from public buildings in many countries, with only small designated smoking areas. Imagine, for instance being able to get on a bus or train or go to a restaurant or the theatre – no people talking, no smells, no crowds, no irritating lights or visual overstimulation. People who wanted those things would be crowded into a small area where sensory disturbance was permitted. This would be well screened from the main sensory disturbance-free area to ensure that autistics and others in it were not disturbed.
Autistic UK campaigns in the UK and beyond to advance the interests of all autistic people and those with “related neuro-developmental conditions”.
Autistic UK will work to ensure that the autistic population of the UK is comprised of happy, healthy, fulfilled and empowered individuals.
Autistic UK envisages:- The establishment of Autistic People’s Organisations (APOs) within every local authority area in the UK