Autism Treatment Trust  

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HealthTalkonline features interviews with 45 parents of children aged between 3 and 57 with autism and the second features interviews with 20 people with ASD.  There are over 300 video clips on the sites from the interviews as well as summaries of the key topics that were discussed and an information and resources section.  

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Life on the autism spectrum

Autism is a lifelong condition that affects the way people communicate and relate to people. The autism spectrum incorporates wide ranging degrees of severity.

Parents of children on the autism spectrum

Autism is a lifelong condition that effects the way people communicate and relate to people. The autism spectrum incorporates wide ranging degrees of severity.

 

A Scottish perspective of the autism spectrum

August 26th, 2008 at 11:39am |

I’ve been invited to present in Edinburgh this September 2008 by Dr. Lorene Amet, a neuroscientist with expertise in brain development, brain ischemia and epilepsy, Principal Scientist with the Autism Treatment Trust and parent of a son with autism. Here’s our interview:

DONNA WILLIAMS
Hi Lorene. Welcome to the interview.
You’re hosting my Edinburgh lecture on Tuesday 16th September this year (2008). What sparked your interest in bringing an autism lecture to Edinburgh?

DR. LORENE AMET

Our charity regularly organizes lectures, workshops and conferences on autism and your visit to the UK was an opportunity for us to invite you. I have personally always been very impressed by your books, art work and I wanted to meet you, even better still to take you out for dinner! I think your contribution within a boarder debate on autism is important and welcomed.

DONNA WILLIAMS
As long as that dinner is GF/CF, I’m happy

What are the autism services like in Scotland in general? What sort of innovative things have been happening for children and adults in your area?
DR. LORENE AMET
There is a general concern amongst various groups, education and health authorities as well as parents. Consequently a growing number people are developing various autism friendly settings with progressively stronger set of guidelines on management from diagnosis onwards.

Autism in many ways seems, particularly recently, to have triggered an almost fashionable interest amongst people. The reality is however not as rosy as this. There are insufficient provisions in schools both in mainstream and special education settings, too many barriers to inclusion, with for example, limited numbers of places available in sport, after school and holiday placements. Many individuals with autism continue to experience daily and severe but unrecognized health issues that remain untreated and basic and effective supports are not made available to families. Finally there is almost no recognition of the full impact of autism in adults.

On the positive side, there are many interesting developments, essentially stimulated by progress made in the United States regarding various intervention strategies. The goal here in the UK and particularly within our charity is to provide a critical, balanced and honest view of available supports and intervention strategies, covering the broadest possible range of intervention whilst keeping in mind that a ground work on equality and human right issue remains paramount.

DONNA WILLIAMS
I think it’s important to recognise that many people with autism and Asperger’s have been taught to be ashamed of or hide their condition or been bullied or pathologised for it and that has done their psyches a lot of damage. I saw you acknowlege this on ATT’s website (who you work for):

“The most commonly encountered attitudes seen are discomfort and rejection, making it invisible. The reasons for this may be very diverse, but are likely entrenched in our deepest evolutionary make-up; our primeval chance for survival in the early environments in which our species evolved was to socialise which implies a rejection of people who could compromise the chances of social survival, i.e. the disabled, the sick, the elderly, the outsiders. This rejection is unlikely to result from our education, because it can be seen even in very young neuro-typical children, however as argued below it can be changed through culture and education. This rejection translates into various forms of abuse and bullying. This can cause incredible distress to people who are different, resulting in life-long depression, stress, isolation and a sense of purposelessness”.

So I can understand why many adults on the spectrum are so vocal and adamant about their ‘autistic pride’. And I was heartened to see ATT values the contributions to knowledge which those with autism have brought to the field. Again, to quote ATT’s website:

“The knowledge we have gained in recent years of autism, thanks particularly to growing numbers of reports made by individuals with autism, their families and advocates, have helped the general population to understand this condition better. Behaviors which were incomprehensible, such as sudden bursts of distress, various forms of repetitive behavior, misunderstanding of people’s intentions, or alternative learning processes, are now becoming understandable”.

In my own research, I found it interesting to read about ego-syntonic and ego-dystonic conditions. The first are conditions which one identifies self with… like personality, cognitive style, life long sensory-perceptual realities for example. So if one is a somewhat obsessive compulsive personality, has always been quite mono-tracked in this multi-tracking world and happens to have social-emotional agnosia so can’t read facial expression, body language or intonation, then one could easily see that as the ME and be proud of that as SELF.

But if one’s autism involved both ego-syntonic conditions and really distressing ego-dystonic ones… like severe gut, immune or metabolic disorders that made life really hard, or such severe mood, anxiety or compulsive mental health disorders that communication, self help skills or just living hour to hour day to day was really challenged, or such a severe level of dyspraxia one couldn’t help oneself, then, yeah, it’s easy for one to feel the SELF is burdened, and to wish for a less degree of those aspects of one’s autism package. And yet the same person may be relatively happy about other aspects of being autistic. For example, I love being solitary, I know no different, I feel it has many many strengths.

I see ATT has acknowledged the positives of autism whilst acknowledging the health issues a percentage on the spectrum also have. To quote ATT’s site:

Most advances in science, art, philosophy and even in the specific understanding of relationships, one of the core difficulties seen in autism, often emanates from people who have the gifts to think outside the general modalities of analysis and interpretation, who have the determination and perseverance to pursue unpopular ideas, who have a different clarity of mind and understanding because their perception and attention to parameters, their form of learning are different. These are all attributes commonly seen in autism. Why shouldn’t the general population embrace this diversity?

This increased knowledge has also helped the general population to challenge the notion of normality, and to see that most neuro-typical people also display the same range of behaviours, though at much reduced level and usually within compatible socio-cultural norms. This raises the issue of normality, when and who should decide if a behaviour is acceptable or not?

Autism as CULTURE is not the whole picture for all people on the spectrum, but nor is autism as ILLNESS, because whilst those with health issues will have fuller, healthier lives with their level of health challenges reduced, even this group will often still deeply value aspects of being autistic they have come to identify with.

For example, whilst I have gut, immune, metabolic disorders, mood, anxiety and compulsive disorders… all managed, and verbal, visual and body agnosia issues, I’m also aware that not all people with autism will benefit from the health treatments, diet, medication, tinted lenses or gestural signing which helped me. At the same time adapting to these issues taught me so many things. I am fluent in gestural signing. I have remarkable peripheral vision, great rote learning, I think musically and kinesthetically, I’m logical and sensory, I map people and situations like an animal might, I have funky synesthesia experiences, I’m great at being in my own company, I navigate preconsciously and my health issues gave me a deep empathy for others who suffer serious health issues… valuable things, even spiritual journeys and part of the Taoist I have become in my daily life.

Working with hundreds of people of all ages right across the autism spectrum allowed me to put my own ‘fruit salad‘ in a very very broad context. And part of my work as a consultant is a commitment to empowering people to try the most respectful, least invasive approaches where possible and that if trying a fad, to ensure they trial it, never presume it will work, will work for all people with a shared label or that it needs to be employed for the eternity of that person’s life if any such trial with that person shows no sign of improving that person’s life.

And there are so many strategies and approaches which are individualised and cost free without diverting funds from essential respite and support services, especially for older children and adults.

So what are the most central issues families of people with autism are facing in your particular region at present?
DR. LORENE AMET

The education system is too often failing a child by not fully recognizing his needs and strengths and not accommodating his uniqueness of learning and being within the existing education system. Equally the health authorities are not covering even the basic medical needs people have. Adults are left unsupported in their living, independence and face incredible challenges to maintain optimal mental health. Equally on the whole, parents are not just unassisted, they are constantly opposed by the system forcing them to constantly fight to request suitable provisions for their autistic children.

DONNA WILLIAMS
I encounter this all the time as a consultant. It’s really hard because other than legal avenues through a disability lawyer, often it comes down to forming really strong community supports. Here in Melbourne, through http://www.auties.org we created dinner clubs and there’s also some activities clubs and I’ve employed some guys on the spectrum as casual gardeners at award rates which has lead to them getting other autism-friendly gardening work. It’s all small stuff, but it’s a good working model and all valuable in the Melbourne adult community. There’s also three other social outing groups in our city so some of the adults are really socially engaged and have belonging in these structured groups with their clear meeting days, places, times… I think this sort of stuff has headed off some heavier emotional-mental issues for some. I think starting small and local is at least starting somewhere and it’s about doing. The auties.org model is open to all people on the spectrum internationally, and I know some other groups have started building these communities.

What are the current opportunities for adults in your region?

DR. LORENE AMET

Opportunities are essentially none. We either have individuals who try to cope the best they can, often with the support of medication or drugs, or individuals who repetitively fail, not only to make the essential friendships we all need but also to be welcomed and valued in their community and work place.

DONNA WILLIAMS

Yeah, that’s a gap the social networks have begun to fill here in Melbourne and also in Adelaide which is doing really good grass roots social support stuff with adults… all voluntary, very cool.

We have also had some adults who are struggling with serious mental health issues, unmedicated. Our health system doesn’t fail them. We have Government funded medical care, largely, but one problem is the taboo, that those with serious mental health issues get told they have Asperger’s and that that means they don’t have any other condition (as well). And with the autistic pride movement so strong and often so anti-medication, those on the spectrum with things like severe bipolar, are really at great risk. 15-20% of adults with untreated bipolar will kill themselves or die by misadventure. And yet if they are on the spectrum and take medication for a co-morbid condition they are often harassed by people who don’t actually know them in face to face contact into dropping medication, avoiding it, and pressured they are somehow selling out by taking it. There’s still an ignorance that one EITHER has an autism spectrum condition OR a serious mental health issue. Yet the stats are that around 30% of adults on the spectrum will have both. Still, I’ve seen those who do be publicly ridiculed in so called online support groups or told they’re not ‘true’ or ‘pure’ autistics. That’s awful. I’ve heard from some such adults who then found themselves more isolated than ever before, just because they voiced that they were seriously struggling with part of their autism. They were encouraged to celebrate all of it. Well mental illness isn’t easy to celebrate, especially if it’s not managed.

Many children who would once have been labeled psychotic, disturbed or retarded are today diagnosed with autism and many who would once have been labeled behaviorally challenged, odd or wierdos are today diagnosed with Asperger’s. Do you feel the labels of autism or Asperger’s are adequate to help people understand and advocate for their needs?

DR. LORENE AMET

Yes and no. On one side, labels give a quick and general appreciation of the challenges, previously unrecognized, a person may have. On the other hand, it automatically influences the perception of a person with autism and limits his or her range of opportunities.

Autistics are seen as disabled rather than individuals. Because the spectrum is very broad and because the general understanding of autism prevailing in schools and health settings is insufficiently accurate and comprehensive, it leads to situations of general gross misunderstanding with inaccurate belief that suitable support is being provided.

Our charity strongly believes that to continue to diagnosis autism according to 3 main behavioral features irrespective of the medical abnormalities associated with the condition is unhelpful. Many cases of children receiving an ASD diagnosis today presents differently behaviorally and medically than previously described in the literature starting with Kanner, Aspergers in the mid forties, Wing in the late seventies, and Volkmar and Fombonne in the nineties.

DONNA WILIAMS

That’s really interesting. But I understand what you’re saying. I read Government science reports that our soils world wide is 75% mineral depleted since 1970. This effects our meat, veg, fruits, nuts, eggs, milk, grains, you name it. Minerals are essential to detox and immune functions and without enough of them we can’t metabolise a range of vitamins. I can’t help but feel the percentage of people with autism who have significant gut, immune, metabolic disorders might not be so health effected if our use of land hadn’t lead to this dramatic decline. I also do feel there is a clear distinction between those with autism who DON’T have significant health or nutrient issues and those who do. And if a child does have gut, immune, metabolic disorders AND autism, then they will usually be a more organised, switched on autistic child once those health issues are addressed. The problem is the possessiveness of the label and that there are actually very different types of ‘fruit salad’ going on for different groups.

Do you feel autism is still viewed as a single condition, albeit a
spectrum? How do you feel this feeds into the current divided stances
of autism as culture versus requiring cure?

DR. LORENE AMET

Autism is not a single condition because many different and unrelated causes have been found to lead to the development of autism. Equally despite extensive search for a gene or genes causative of the condition, no strong candidate has so far been identified. It is a spectrum of behaviors and conditions. We dislike the word cure because it is an unlikely and unrealistic outcome for most people with ASD that implies that until a person’s behavior is normalized it cannot be fully considered as a normal individual. A more realistic desirable outcome is about providing optimal health, optimal happiness and optimal level of independence for people with autism.

DONNA WILLIAMS

I totally agree and have seen the additional emotional-psychological damage done to children whose parents can’t see the person, only the pathology, as they wait for the child to be ‘normal’ via cure.

I’m often asked whether I was severely autistic or mildly. I feel I began in the moderate range with severe phases and ended up in the mild range with moderate phases. I wouldn’t eat a meal from a plate until I was 10. I vomited up food I was made to eat for the first two years of eating it until I was encouraged to eat with my reflection (yay). I wouldn’t chew. I had hypotonia, tics, rapid cycling bipolar stuff, got pretty full on OCD stuff in late childhood, regularly bit, punched and scratched myself until my teens and intermittently into my 30s, didn’t get functional language until late childhood and then had regular episodes of Selective Mutism in which nobody knew if I’d ever speak again. I was toilet trained at 3.5 years but would hold on for days with associated health issues and had a phase in my teens of urinating in my room. So life with me was no bed of roses. But my father always saw the person, even when I was most withdrawn, dark, volatile, lost, and I feel that was one of the greatest things. It didn’t ‘cure’ me, but it stopped me being lost completely. My parents experimented with so many quirky mostly cost-free or low cost ideas and many worked great so I did feel like a ‘case’ but he and my younger brother made me at least feel very much a human being.

Because of that humanity shown to me, I can understand the need for treatment in a case like mine. That’s not the quest for cure, but of management.

Awareness has grown of sensory perceptual disorders (agnosias), motor planning disorders (dyspraxia), sensory integration issues (neurological integration issues), co-occurring mood, anxiety and compulsive disorders or gut, immune, metabolic disorders in a PERCENTAGE of people with autism. Yet any given person with autism may have any combination of these or none of them and merely be an ‘autistic personality’. Do you feel it is helpful to understand that autism may well be more like a variety of combinations of ‘fruit salads’ rather than seeing ‘autistics’ as one homogenous group?

DR. LORENE AMET

Yes, the condition is heterogeneous. To identify specifically and individually across all potential behavioral, medical and emotional parameters a range of strengths and weaknesses provide the best understanding one can have of a person and thus the best possible support and intervention strategy. The fruit salad metaphor might be offensive however to people with autism, after all we are all composed of sums of qualities and weaknesses and we are all individuals, autism is no different in that respect. The difference is that whilst most neurotypical individuals can live happily without being fully understood by others and themselves, ASD people generally do better with accurate and comprehensive understanding of who they are.

DONNA WILLIAMS

I totally agree. I do feel that we are all made up of ‘fruit salads’ and also that we all have autistic moments, even autistic phases in our lives. For example, someone with the flu or who is disoriented from a close loss or great upheaval may have a pretty autistic week, month or year. I know a woman lost her husband and young daughter in a truck accident and she spent many years in a relatively autistic phase. So I’m not into the convenient separatism of autistic versus ‘Neurotypical’ and I think atypicality takes many forms, not just those with disabilities, autism or homosexuality.

At the same time, I regularly find it really difficult to manage socially or communicatively in non-autistic society and my receptive processing challenges make me relatively unemployable beyond the autism and arts works I’ve managed to do. It’s often because non-autistic people speak too fast for me, touch me when I can’t visually or physically process their actions, give me instructions in ways I can’t use, look for my feelings when I don’t show them conventionally, or take my processing issues as rude or personally. But I also have some wonderful non-autistic autism-friendly people in my world. So it’s really down to individuals and also self advocacy.

I’m coming to Edinburgh this September 2008, doing a lecture called “Clashing Normalities” which contrasts they different sensory-perceptual, cognitive, communication and social emotional differences of autistic and non-autistic people and gives tips on how the non-autistic world can become more autism friendly. What are you hoping audiences might take home from my Edinburgh lecture?

DR. LORENE AMET

I am hoping that people with autism who will attend the lecture will understand more about themselves by comparing the information you will provide to their own experiences and individualities. I am hoping also that people who care for autistic people will continue to learn critically about this condition. It is a goal that will continue to require comprehensive, thorough and genuine examinations of information on the condition.

DONNA WILLIAMS
Public speaking is one area of employment for people on the autism spectrum who otherwise struggle to get or maintain employment in the mainstream workforce. I’m certainly one of those people, albeit with a qualification as a teacher and over ten years experience as an autism consultant. How do you feel my presentations may differ from presentations by other presenters both on and off the autism spectrum?

DR. LORENE AMET

I have not yet heard you speak so it is difficult for me to answer this question. Tentatively, though it seems from what you have written, your artistic contributions, the information that was provided for the preparation of your lecture, that you have reached a level of achievement, functionality and independence I have not yet seen in any other autistic speakers I have met over the past years.

DONNA WILLIAMS
Thank you.

DR. LORENE AMET

Thank you.