Some adults on the autism spectrum consider they would really like to help others on the autism spectrum and asked how I became an autism consultant.  Here’s the synopsis.Some people think my first diagnosis came in adulthood.  But in fact I was diagnosed as psychotic at the age of 2 in 1965, then labeled disturbed through childhood and still tested for deafness at age 9 when it was finally realised that I was meaning deaf.  Autism was mentioned around 1973 when I was in late childhood.  But because I was considered a psychotic and disturbed child and because I had a huge repertoire of songs, jingles and stored phrases from TV Sit-Coms and because I tended to mania, had little sense of danger and was female in an uneducated and highly dysfunctional family I didn’t fit the stereotypes of the 1970s and so wasn’t formally diagnosed with autism until my 20s.

By my 20s I had a wealth of life experience by the time I made my way back to education and did Biology, Sociology, Social Psychology and Ethics at college then went on to do an honors degree in Sociology, including Sociology of Mental Health and Personality, Sociology of Education, Sociology of Culture and a graduate degree in Linguistics, the study of language, including Psycholinguistics which includes the study of language disorders.  Somewhere in there I also began my journey in treatment for gut, immune and metabolic disorders which brought me into contact with neurologists, immunologists, pharmacologist and naturopaths.  After I wrote my first of nine books, Nobody Nowhere, I did a post graduate Diploma in Education and became a qualified teacher.

On return to the UK and in the next few years before my second book, Somebody Somewhere, I spent several years doing voluntary work at special needs support groups, schools, meeting parent and autistic children and adults right across the spectrum.  I also spent 4 years writing back to parents who wrote to me with reams of questions and allowed myself to be studied by journalists and therapists and autism professionals and researchers.   During this time I was also able to experience first hand a range of approaches associated with the treatment of health issues, sensory perceptual disorders, emotion dysregulation, neurological integration deficits and speech and communication issues.

This was the early 90s before any diagnoses of Asperger’s Syndrome was common in the English Speaking world so most of the people I met were those with quite obvious autism-related issues.  By the time I decided to become an autism consultant I not only had a firm educational foundation in Social Psychology, the study of language, education and basic biology, I had some familiarity with  the range of issues facing families, siblings, residential carer workers, teachers and support workers,  and adults with autism.

When I became a paid consultant in 1997, I drove all over the UK, visiting people with autism in their homes, schools, residential settings, day centres, support groups and by now I had several published text books.  So this consulting work coincided with international lecturing work  which also took me to meet a wide range of children and adults with autism in other countries too so I now had a comparison of services, definitions, needs between countries.  As a sociologist this allowed me to see how different definitions, different support structures, effected what was defined as autism and it’s associated stereotypes and exposed me to a range of approaches and therapies which differed from country to country.

By the time I left the UK, five years ago, I had run a 6 month training course for UK SENCOS (School Special Educational Needs Co-ordinators) in the Midlands, been involved in the 2002 Medical Research Council’s research into Autism, had 8 of my 9 published books already published and had worked directly with 100s of people on the autism spectrum.

Where does one begin in becoming an autism consultant?  I’d say

1) The diversity of ‘autism fruit salads’ possible and the personality packages and environmental influences and backgrounds they come from mean YOU cannot be the sole source of your knowlege about autism.

2) Have a firm professional foundation behind you – Sociology, Psychology, Social Work, Teaching…something that teaches you about diversity, about relativity, about research, about objectivity, about note taking, about thinking holistically and outside of the box, about ethics and boundaries and professionalism.

3) Have a broad range of life experience to draw upon.  Have you traveled?  Known people of very diverse cultures, backgrounds, languages?  Experienced major life changes?  Autism doesn’t exist in isolation.  It has a broader social, economic, geographical context.  If you have little life experience to draw upon, you will be limited in your advice.

4) Be able to listen and be a good communicator.  Being meaning deaf meant I became fluent in gestural signing, I speak in bullet points, I physically demonstrate complex ideas through representational objects, actions and characterisations and I’m happy to get people to SHOW me what they have understood.

5) Expose yourself to ideas you do and don’t believe in.  Some of the most innovative help comes from lessons in finding your own assumptions were limited or wrong.  Sometimes something that doesn’t work for a majority, still works for a minority.

6) Like people.  No point being an autism consultant if you don’t like people.  And no point saying you only care about those with autism, because they have siblings, parents, extended family, support workers, may even have friends, who are not at all on the autism spectrum but who they greatly value and need, even when and if they feel utterly misunderstood by them.  So you have to like PEOPLE, not just those on the autism spectrum.  I’m hugely solitary, but I have a strong humanity and I care about humans.  Sure, I struggle a lot with ignorance and inequality out there, but as a consultant, my job is to break down barriers, not build further ones.

7) Put your politics aside.  Whatever politics I’ve had, there will always be those who will thrive in some therapy I don’t resonate with, who will be happy in an activity that is entirely outside of the autism stereotypes, who will have a personality which drives them to feel more comfortable with non-autistic people or any other range of surprises.  Allow yourself to be surprised.  It will make you a better consultant.

8) Keep reasonable time, charge a reasonable fee for your time and have a good professional, comfortable consulting space.  Good professional boundaries are really important to your own health and to a client’s ability to take on the hard work themselves without you becoming a walking stick.  Charge depending on your experience and qualifications and feel free to have a sliding scale of sorts but remember a burned out consultant is a bad consultant.  Your clients won’t come and clean your house for you, so it is not good boundaries to demonstrate they can make you work cost-free any time they need you.

9) Refer.  People are multifaceted and so are their needs.  You cannot be the expert in all things or all things which may help them.  Sure, learn what the range of services are you can refer people to, but be clear when someone’s needs are beyond your expertise.  Being a good referal agency is a skill in itself.  You can always be there to monitor how those referals have gone.

10) Update your information.  There is no such thing as knowing it all.  And the autism world is like any area of knowledge and skills, it moves forward (and sometimes backward), it becomes as rife with new fads and stereotypes as much as it discards the old ones.  So don’t just spout rhetoric or regurgitate old information, stay open and exposed to new information in the field but also keep a critical yet open mind about new fads and stereotypes.

Warmly,

Donna Williams, Dip Ed, BA Hons

http://www.donnawilliams.net