From harsh beginnings Aisha came into a fortunate adoption with an autism friendly family who are able to see the person she is and work to shape a world in which her personhood can blossom and be appreciated. Here I talk to her adoptive father, David Clark who has an exciting idea of starting an autism community in Brasil. I’ve asked him about it, and about Aisha. Here’s our interview.

DONNA:
Tell us about Aisha?

DAVID:
Where to start? Aisha was adopted by us in Brasil when she was 3 months old. She had been abandoned by her parents in a shanty town in Salvador. She was unwanted before birth and even less wanted after birth, but she survived it all and made it here to the UK.

A neighbour of her parents (about whom we know almost nothing about), took her to an orphanage where she had stayed only a few days after being released into our care. She was actually taken to the orphanage on the day my wife arrived in the country for the purpose of adoption. When my wife entered the room, Aisha fixed her with her eyes. She was released into her care straight away as she wasn’t’ well at the time and needed to be taken to a paediatrician. At the time, the orphanage had very little resources and there were 2 babies to a cot. We have been back since and it has totally transformed.

As a baby and toddler there was nothing very unusual about her. She was very active and almost from the moment she could walk, she was walking a mile comfortably. Physically and in her movements she was very adept and fearless. She was always happy to go with baby sitters without a look back. She would go on swings for hours if she could and screamed when she came off them . We did notice at the age of around 2 that if she went to playgroups she could never follow instructions and was a bit anarchic.

She went to a Montessori nursery school who first spotted a problem and asked us to take her for a hearing test. We also noticed that she had a ritual before she entered the house or turned the corner of the street to her school. She would say “Na beijao pwetty, tay sa fay” (Beijao is “big kiss” in Portuguese). She also came out with “Uffing dalials” when we past a certain building. Anyway her hearing was ok and she was referred to a child psychologist who diagnosed her as having a ‘semantic pragmatic language disorder with mild autistic features”. She was also described as very echolalic. This resulted in her moving from the Montessori school and going to a small unit that had just been set up for autistic kids and was run by someone who had trained in drama and she was really great. From there Aisha went to a big special school which she loved and where she had no real behavioural problems. They could scarcely believe us when we told her how she was at home. The worst aspect of this school was the hour journey there, she would arrive back explosive and was difficult on the bus as well.

At the age of 3 she would like to go for a 2 or 3 mile walk every evening after school and loved going to the train station and watching all the people get off and watch the trains whiz by.

When she was twelve we moved to Brasil for 4 years. The onset of puberty brought on much more extreme behaviour and now she was much stronger too, but she was still ok at school most of the time. She didn’t speak any Porguguese when we went there. My wife had avoided speaking to much in Portuguese because we thought 2 languages would just make it more difficult for her, but we found in fact that she had no trouble adjusting to another language. Her problem is with the the structure of language and as she has a good musical ear, she actually picks the language up quite easily and doesn’t have any inhibitions about making mistakes. So in retrospect we regret having stuck to English in her early years.

DONNA:
What have been her greatest assets?

DAVID:
She has incredibly energy and concentration when something grabs her and she will persevere at something with a fierce will. When she was 13 and we were living in Brasil she use to go to swimming lessons and the teacher said that she would tell her to swim lengths of crawl and Aisha would just carry on swimming up and down the pool until she was told to stop!

We once went walking in the Black Mountains of Wales. We had set off rather late in the afternoon and after we had got so far ,we decided it was time to turn back, as the walk on was a whole day’s walk. Aisha didn’t want to go back , as always she wanted to go on. We managed to distract her into returning, but a few days later back in London she said to me “when I go walking in Wales, I want to go on and on and on until I die.’ That sums her up.

She is fearless (once when she was small I walked into the 2nd floor bedroom and found her perched on the window sill like a pigeon. She appears not to be in any way inhibited by any ‘idea of being autistic.’ She will be out in the street and see an unknown woman walking by and say to her : Your hair is beautiful. She is always able to bring a smile to people’s faces.

She is completely without prejudice. If she sees someone in a wheelchair or a blind person , she will go up directly to them and ask what’s wrong with them and how they got like that and she will say, ‘ want to be in a wheelchair. I want to be blind.’ She seems to want to just experience everything.

She has the most uncanny sense of direction. She will have been on a route once and be able to direct me (and even sometimes deliberately misdirect me!) through the back streets of London along this route. Once she directed me to a place she had been to 10 years before by a completely different route to the one that we used to take. I would certainly have been struggling to find my way without a map even along the route that I used to take.

She is also very musical and has a good voice and no inhibitions about singing in public (even in the street or supermarket). In school here they offer music therapy, but in Brasil she used to take singing lessons with an American rock musician and sang songs in Portuguese and English.

Despite her screaming and her outbursts and aggressive behaviour, she is incredibly gentle and patient with small kids. I guess they are attracted by her playfulness and affectionate nature and as well by her idiosyncracies.

DONNA:
Yes, I have a strong tendency toward passion and rage (what artist doesn’t?) but with animals and children I’m very tame.

When someone is autistic, much of their personhood gets caught up in or mistaken for their autism. What is it about Aisha that fits autism and what is simply just who Aisha is as a person who happens to have autism?

DAVID:
This is such a tricky question, as we are all of us so shaped by the experiences and challenges that we face. Clearly Aisha’s language disorder fits in with one strand of the triad of autistic impairments, bu t Aisha’s idiosyncratic love of playing with words
and sounds is uniquely her own and in a way is supported by her difficulty with the linear and the abstract use of language.

Likewise her difficulty in grasping social rules supports her to be uninhibited and direct with people, but that is also part of her outgoing Brasilian nature too. She is very physical and affectionate and in her English schooling , she is often told that this is inappropriate, whereas in Brasil this was taken naturally. In a way. I think it would be good if we could view people with autism as questioning some of the assumptions on which we base our own perceptions and behaviour. The mainstream often has a view there is a ‘normal’ way of being and doing and the autistic person disrupts that view. In the native American Indian tradition, there is a figure who does everything backwards. She rides the horse backwards, says goodbye when meeting and hello when leaving.. I feel that the autistic person also sometimes fulfils that missing function.

The most difficult aspect of Aisha has been the screaming and aggressive outbursts
which you can see as an aspect of autism, but the intensity of it is also connected with hormones and the overall intensity of her nature.
,
DONNA:
You’re setting up an autism community in Brasil? Tell us about it and why Brasil?

DAVID:
Well we spent 4 years in Brasil when we failed to get a residential place for Aisha here when she was 12. My wife is Brasilian and both Aisha and her brother were born there. At present Aisha is in a residential placement in London. She has 24 hour care and her own studio flat, but there is no communal space and no outside area and she spends way too much time cooped up. Aisha loves to be around animals and is at her best in this environment and her behaviour is fine. Aisha will leave school this summer and we really saw no future for her here. In a way it is crazy, because here it is paid for and in Brasill we have to fund it all. But there is perhaps the opportunity to do something in Brasil that doesn’t really exist there.

We are doing this in conjunction with the special school that Aisha attended there.
They really support inclusion and focus on the kids abilities and potential rather than their disabilities and there is tremendous parental support and involvement. There is a real sense of community.

We hope that the farm we have bought, which has cows, horses and chickens and will also have rabbits and dogs and cats, as well as organic fruit trees, can be a place for Aisha to live with more independence, a resource for the school (it is just 15 minutes drive away), a respite centre and also develop into a residential place for other autistic young adults.

However we are going to proceed slowly as we have limited resources. The other great thing there is that they don’t have a cut off at 19 years at the school and Aisha can continue there and can be taught to assist with smaller kids. I remember when she was about 8, I asked her what she wanted to do when she grew up and in an instant she replied “ I want to teach people how to speak”, so maybe she will teach the kids there some English!!

DONNA:
I have tutored in beginner’s English. My own spoken English can fluctuate between the syntax and errors of a 3-5 year old and passable academic speech and in between I speak well on familiar topics but my language challenges become clear through the cracks. I hope she gets the chance to tutor others.

You used my online consulting service. It’s pretty odd consulting with someone via email. Did it surprise you?

DAVID:
Well I can appreciate it might seem odd to some people, but I do a lot of my own work via email and phone and so it seemed completely natural to me. I think what did surprise me was how you were so able to get under the skin of Aisha without meeting her and then ,when I sent you a photo of Aisha after the first few sessions,
how your were able to read from her face some of her autistic relational difficulties. I do know someone in the US who is able to do medical diagnosis psychically and has been scientifically tested to be about 93% accurate ,better than any doctor. Well, I had a similar feeling about your ability to read Aisha.

DONNA:
I don’t know about psychic, but I would say I’m a sensing systematician. How’s Aisha doing now?

DAVID:
Well , since she has been on the contraceptive injection her mood swings have levelled out a lot. She still gets angry over tiny little things and screams, but is clear that she wants to be left alone to get through it. She is like April weather in England. One minute sunny, next minute a storm and then just as quickly sunny again as though the storm has never happened. I am curious to see how big a difference there will be when she is around animals all the time. She can be happy for hours just catching lizards or unearthing worms or newts or toads, playing with dogs and cats.

The biggest change is that she has much more awareness of other people, so that now if I am on the phone with her and have to get off and do something she will now say “Oh, you have to go to the shops now, bye” whereas before she would have very little sense of another person’s needs and just pursue her own relentlessly. She is beginning to be able to negotiate more.

DONNA:
Yes, there are certainly women whose bipolar issues are closely related to hormone cycles and I think there’s a great lack of awareness about that. Whilst the use of the contraceptive pill to iron out extreme hormone fluctuations is not commonly known of, nor applicable to all, I hope Aisha’s experiences may give hope to others struggling with severe hormone-related impulse control issues.

It’s really fab she’s managed to make that leap to being able to mentalise about other people now. It will make the world easier for her.

Anything you’d like to mention?

DAVID:
I think the knowledge that Aisha as a defenceless abandoned baby soon found herself living in a comfortable home with us in London made me realize that life is utterly unpredictable. That she was later diagnosed as being on the autistic spectrum was a shock, but equally unpredictable. I like to think that ,given her fiery independent and persevering nature, her future is also unpredictable. Although we have brought her up, as an orphan, she is a child of the world and somehow I think that deep within her she has that skill to find her way in it.

DONNA:
I understand this and agree with you. Thanks for the interview.

DAVID:
Well I would really like to thank you for this interview. I have been wanting to begin writing about Aisha and having these questions has helped kick start that.

DONNA:
No problem.
Warmly,

Donna Williams *)
author, artist, screenwriter, composer.

Ever the arty Autie.
http://www.donnawilliams.net
http://www.auties.org

UPDATE!!!

 Dear Donna,

Hope everything is going well with you.

You may remember that some time ago we did an interview about my setting up a residence for young autistic people in Brasil. Aisha has been living there for the last 8 months and it has made a big difference in her life. We are now going to promote it to take others.

This is the website that I am just finishing http://www.fazendaesmeralda.com so thought you might like to take a look.

You really put some work into your site – it’s great.

Best wishes

David Clark