Fifteen years ago, I started work on my first book about autism. My son was three and we were in the process of obtaining a diagnosis--which ultimately took over three years (a length of time that was, and still is for most, fairly typical). I felt that meanwhile precious time was slipping away, time in which we should be "doing something." I'm a writer, so that something was writing.
I felt frightened and confused and, when it came to the problems we were having obtaining services, pretty angry.
My son is 19 now and I no longer feel that way. He is an adult with autism, and we are a happy, intact family.
Below the fold, a story about how we got from there to here, with links to resources that may be helpful to others on similar journeys.
Our son was a happy, healthy baby, but we were aware by the age of six months that he was not developing on schedule. He had trouble sitting up, then trouble standing up. He dragged his legs instead of crawling. He never babbled as my older child had done. After several lengthy rounds of "wait and see" with our pediatrician, we finally got the go-ahead to begin the formal diagnostic process.
Fifteen years ago, it was as if autism was a rare condition. I now know that what was rare was a) parents actively seeking the diagnosis and b) parents from the middle and upper classes, having received the diagnosis, keeping the child in public view. Bruno Bettelheim died the year my son was born, and change finally began to happen. But it happened slowly, and we encountered Bettelheim-era professionals along our way. For those who don't know, from the 1940s through the 1980s, the standard theory was that autism was caused by bad parenting. Bettelheim couched this in Freudian psychology (the "refrigerator mother" theory) and his rival from behaviourist psychology, O. Ivar Lovaas, blamed it on poor operant conditioning in infancy. The effect was the same: parents felt such intense blame that to have one's child diagnosed with autism was an admission of child neglect or abuse.
Those parenting autistic children today, when "autism awareness" campaigns, sponsored walks to benefit autism charities, and simply having an autistic child are spoken of openly and even celebrated have, thank goodness, no idea of the stigma parents faced just 20 or 30 years ago. Today, idiots like Michael Savage still talk nonsense but face mainstream opposition. Then, Bettelheim had a column in a top women's magazine, and was a regular guest on TV talk shows. Lovaas's use of electric shocks and slaps as a "treatment" for autism was the subject of a fawning multi-page spread in Life magazine. Mainstream books for professionals and parents referred to children with autism as inhuman monsters.
As a result, pressure was huge to institutionalise autistic children at the earliest opportunity. State hospitals were full of autistic kids; those that are open are still full of autistic adults who have grown up within the system. My husband and I were on the receiving end of this pressure, but by the 90s it was less easy to do. Many of the large institutions had started to close down in the 1970s as a result of multiple scandals about sexual, physical and medical abuse and neglect of those who lived in them. A large private system still existed (and still does) but costs were increasing due to regulation and spiraling health-care costs. Today, institutionalisation is an option only for those parents who are unable to cope due to their own difficulties, and the well-off. This situation was beginning to have a demographic effect in the 1980s.
Another factor in the gradually increasing visibility of autism was the Education for All Handicapped Children Act, which was passed in 1975. Prior to that year, children seen as having disabilities did not have an absolute right to public special education. Many older parents I have interviewed experienced having their autistic child rejected by the local school system--this, of course, added to the pressure to institutionalise, and ensured the "invisibility" of autism in the wider community. The EHC was later expanded upon by the Individuals with Disabilities Education Act, which stipulated that children should be educated in the least restrictive environment.
You may be wondering why I've started this diary with a history lesson, rather than a description of the features of autism or a discussion of its medical aspects. That's because autism is not a thing apart from all other forms of disability or of humanity in general, and the way we understand it, and how we treat and educate people who have it, has everything to do with the shifting politics of disability and concepts of normalcy. People with autism have always been with us, but how we perceive them has changed. This is more obvious when it comes to Asperger syndrome, which 50 years ago would likely not have been perceived as a "disability." Changing patterns of education, work and ideas about "normalcy" have produced the concept of Asperger syndrome as a disability. It can (and has) been argued that the same is true of intellectual disability/mental retardation, and of autism as well. That doesn't mean that no one with these conditions experienced distress or difficulty in the distant past, just that as a society we had no way of conceiving of them as conditions.
To see what I mean, have a look at the criteria for autism. The DSM-IV criteria are based on Lorna Wing's triad of impairments, and require that the condition begins before the age of 3 years old, and features some degree of "impairment" or "delay" in the following areas:
* social interaction
* language as used in social communication
* behaviour (specifically, "restricted, repetitive and stereotyped patterns of behaviour, interests and activities").
The concept of a "delay" requires that an accepted schedule of normal developmental timing is available to compare against; the concept of an "impairment" requires that there be an accepted standard of normalcy to compare against.
Today we have these standards--and it was failure to meet these standards that caused our family much of the distress we felt 15 years ago. We already had an older child who had developed as expected, and I had taken Child Development in college. The doctors who examined our son agreed that he was different in some way (the fact that he could only say 5 "words"--sounds, really--at age three was a bit of a clue...). For me, the impact of this difference came home when I began to try to find day care for him, and he was immediately rejected by both local centres. His differences meant that he could not fit into pre-existing structures and systems.
At age three, our journey through the special education system began with Early Intervention. Only six hours per week of services were available, in another part of town. He spent longer on the bus to get there than he did in this "enriched pre-school" environment. He attended a group made up of three boys who were all eventually diagnosed with autism, one autistic girl, and two children with intellectual disabilities. The focus was on play and communication, and it was a good programme, though nowhere near as intensive as is now recommended. We had to fight to get it. In a city of 500,000 people, it was the only public education programme available for children with developmental disorders.
In this programme he made a huge leap forward. Without intelligible speech, he was constantly frustrated. This resulted in some very understandable behaviour, and didn't help his social functioning either. He was introduced to what was then a fairly new communication system using picture cards instead of words--PECS--and that helped him understand what communication was for. It also helped him get around the problems he had producing speech. Like many people on the autism spectrum, he also has a problem with motor control called dyspraxia, which still affects his ability to speak clearly. This programme also introduced us to sensory therapies, helping him get used to different textures, smells, sounds and tastes. Although it's not part of the DSM-IV criteria, differences in sensory perception are by far the most frequent reason for distress reported by people with autism.
Unfortunately, this programme lasted only a year, and was followed by another that used abusive restraints and "holds." This programme (private but publicly funded) was based on psychological principles. We wish we had known that at the time. We feel that the year and half our son spent in it caused great damage. These kinds of experiences are, sadly, common. It was followed by a few years in a good mixed-ability special needs class in the US, almost three years in mainstream with support in the UK, and then a final year and half in a school for children with "emotional and behavioural disorders" in the UK. As this history indicates, even now autism is not well catered for in education. The number of specialist school places does not match the number of children who need them, and often these places are taken by children with the pushiest and best-conneced parents, not necessarily those with the most severe needs. All four families with autistic children in our son's preschool group were told to expect that their children would be in special schools, but all have spent at least some time in mainstream. Today, children like these can expect to be taught in mainstream schools. I now work training teachers to work with autistic children, but there is a huge shortage of skilled professionals. Support in mainstream is much better than it was 15 years ago, but also variable and hard to get.
One thing that changed very little over the years was how professionals saw our son. He was seen as a "problem" by almost all. Of course, as parents we saw him as our son, but for a long time we instead saw his autism as "the problem." That's why we at first accepted the private programme, and tried lots of other things that professionals told us would help: vitamin formulas and other "biomedical treatments," psychiatric drugs, various therapies. Of these, I will say that the sensory methods, good special education (when he could get it), speech therapy, PECS, and physical therapy have held up as actually being helpful.
What helped the most was accepting our son as an autistic person and learning how to live and work with his cognitive style. This required getting to know other autistic people. Along the way to our son's diagnosis, my father realised that he had Asperger syndrome while trying to read things about autism. I also got to know two people with autism--Mark Rimland and Roger Meyer--though my work as a journalist and activist. Mark had severe autism as a child; today most people would say he has "moderate" autism and mild learning difficulties. Roger has high functioning autism. I could see aspects of my son in both these men, as well as reflections of my father--and of aspects of myself and my husband. His future became less frightening as we started to conceive of him not as a "problem" but as a person with his own quirks and interests, just like ourselves, our parents, and people we knew.
Another crucial factor in changing our attitudes came by way of another adult with autism, Jim Sinclair, whose article Don't Mourn for Us challenged very directly the way we had been encouraged to see our son. I recommend that all parents read this piece.
When I moved to the UK, I discovered disability studies and the formal concept of the social model of disability.We came to see how the differences that characterise people with autism "become" disabilities as a result of our society's social inflexibility, insistance on the superiority of verbal communication, and lack of understanding for behavioural difference. This doesn't mean that impairment is not there (certainly my son is still challenged by his problems with speech and social understanding), just that impairments of all kinds become far less significant when we find ways to include people with differences.
The science of autism has also moved on. We now know that it is a multigenic, heterogenous condition. That means that many, many genes contribute to it, and that some of these genes may make individuals more or less susceptible to additional environmental factors. There will be no genetic test or genetic therapy--it's a variant on being human. Some people with autism have additional problems, such as seizures or gatrointestinal problems, that need medical care. Some do not. All need for us to shift our insistance on the importance of people being the same. "Normal" is only ever a centre point on a wide continuum of ways to be, but it is increasingly used to police all of us in terms of appearance, behaviour, ability and even thought.For those whose differences are especially pronounced, such as people on the autism spectrum, this has especially damaging effects.
I'll conclude this already too-long post by saying that ideas about autism have a political impact as well. For a long time, they produced public institutions whose effect was to make autism disappear from view entirely. Changing ideas have since produced segregated "special" services and stigma for those affected, as the "catastrophic" concept of autism remains. Ideas are slowly changing again, towards supported mainstream education and increased independence and choice for adults. But old ideas hold on, and it isn't made easy by the severe lack of services and support families continue to encounter. It's definitely made harder by those who benefit by selling unproven treatments, who need autism-as-tragedy as part of their sales pitch. Just as my own ideas changed when I began to get to know people with autism, I hope the same will be true for other parents. Change is already happening now that adults with autism are increasingly able to speak and advocate for themselves. Methods are available for those who are non-verbal and/or have intellectual disabilities as well as autism. I've been very pleased with the changes this has wrought here in the UK, where the National Autistic Society has left appeals for pity behind and become a force for good in national government. In the US, the tragedy/cure mentality is stronger. I think it's an effect of our lack of a health and social care system--parents realise what the stakes are, and we feel fear and despair. We are encouraged to focus this on our children, instead of on the system that produces it.
This weekend my son is home from university, where he is finishing his first year of a film production course. He receives lots of support to enable him to attend univeristy and live as independently as he can. Although he is bright and able, his grades are lousy. He will always need some level of support. We accept that, and the fact that we will no doubt spend the rest of our lives kicking down doors to make sure he receives it. Tonight we're all going to see one of his musical heroes, Peter Hook from Joy Division and New Order talk and show some film footage, and I am dreading the likelihood that should they happen to come within three feet of each other (likely--it's a very small venue) our son will probably try to hug him. He's a hugger, socially immature and often socially inappropriate. He struggles to manage everyday things at times (upon moving into his new flat, he couldn't get the stove to light so lived on takeaways for two weeks until his housing support officer stopped by... and found out it was an electric stove.) Sometimes he has a violent temper as well. It's definitely not all smooth sailing these days. He is going to need for people to cut him some slack and help him with difficult choices. He will need adjustments to his work environments in future, just as he has done with school. We need teeth in the laws and regulations that govern disability services and supports, and funding, to make this happen.
One way you can make a difference in the US is by supporting Obama's appointment of Ari Ne'eman the first autistic adult to the National Council on Disability. The NCD works on public policy to prevent discrimination against and encourage inclusion of people with disabilities. The experiences and perspectives of autistic adults are needed to inform those debates. I have not met Ari but recently interviewed him by email and came away impressed. You can read more about his views here (as you'll note, he is not focussed only on autism.) His nomination is currently being held up by an anonymous Senator. Public pressure on the Senate might be helpful.
There are also many state-level efforts in need of support, such as the New Jersey state de-institutionalization bill and other efforts to replace institutions with community-based supports and acceptance.
Since I'll be out for a good part of the evening, I won't be able to answer questions and comments til later on--but I will. Happy to discuss any autism-related topic, including any not mentioned in this post.