Fostering an autistic child

The last few posts I did about parenting were a bit depressing, but today I want to share an uplifting and insightful story about a couple in the UK fostering an autistic child. To protect the child's identity, I cannot use any of the real names in this article, I will call the couple I interviewed Fred and Anna (not their real names). As my regular readers will know, I have an autistic nephew in Singapore and I am always trying to meet people who are dealing with autistic children to see if I can learn anything from them. Fred and Anna are retired teachers and are currently foster carers for an autistic child, Joe. This was an interview I had with Fred and Anna recently.

Limpeh: Hi Fred and Anna, please tell me how you came to foster Joe (not his real name).

Fred: We've both recently retired from teaching and for a while, we thought, this is great, we have so much time on our hands. Fred and I did miss the interaction we have with the students at our school, so we were still volunteering for a lot of things in the local community as we have a lot of skills as experienced teachers. We have always had autistic children in our school system - we're talking about autistic kids who are not so severely autistic they can't function in a normal school, but kids who just need a teacher who understands autism and how to cope with it.

So this social worker we knew through the school system talked to us about fostering and we thought, okay our kids have grown up and are now working. We could try it - why not? I have a friend who is a foster carer so I knew quite a lot about it. There were a few things we had to go through to become foster carers - training, background checks, more training. Then we had to be matched with the right child in the local area... It took a while.

Limpeh: How it is different from adoption?

Can you care for autistic children like Fred and Anna?

Anna: When you foster a child, you care for the child for a predetermined period of time. In our case, Joe's mother cannot cope with raising a very difficult autistic child. She needed help...

Limpeh: What is the situation with Joe's mother?

Anna: She is autistic too has a severe case of OCD. She must have things a certain way in the house - the phone must be in on this spot on the table, the cups must be cleaned a certain way, the chairs must be in a certain position, she must dress a certain way. If anyone breaks her pattern, then she would go apeshit. Joe wasn't doing it deliberately, but each time he moved something, she would scream at him, beat him up... He was terrified of her and he couldn't understand why she got so upset. It was a disabled mother trying to care for a disabled son. It got to the point where she was in no position to care for him so social services got involved and he was put into the care system. Now Joe could end up being passed from one carer to another over the years, or he could be placed with a foster family like ours and we could try to make life as normal as possible for him.

Limpeh: May I ask, what about Joe's father?

Anna: His parents are separated. Joe's father works as a truck driver, hauling goods from one end of the country to the other - Joe barely sees his father and the relationship between Joe's parents has completely broken down.

Fred: Barely sees? I think it has been a very long time since Joe last saw his father and his father really just doesn't care to have anything to do with Joe today. He is just not interested at all.

Limpeh: How old is Joe now?

Fred: 13.

Limpeh: How long have you had him now?

Anna: Nearly a year.

Limpeh: So he lives with you? How does the fostering work?

Fred has been far more of a father to Joe than his real father. 

Fred: A couple of weeks at a time. Social workers have decided that the best thing to do is to try to assist the mother in getting the help she needs, so that she may, at some point, be in a position to take her son back again. Deep down inside, she wants to be a good mother... But she can't do so right now.

So for now, she really needs to focus on helping herself before she can care for her son - she needs help. So she is getting the help she needs, she doesn't need the stress of trying to take care of a disabled child right now - and that's where we step in. We take Joe for a couple of weeks at a time, he then goes back to his mother for a couple of weeks and we're not far from each other. We hope that Joe and his mother can have a normal relationship one day, after she has the space and time to get herself to where she needs to be, to be in a condition where she is fit and able to perform her duties as a mother who can provide for and care for a boy like Joe.

Limpeh: Why have you decided to do this?

Anna: (Pause) If we didn't do it, who would? Who should? As retired teachers, we have had four decades of experience... make that eight decades of experience between the two of us, coping with all kinds of difficult children. We have seen it all, dealt with it all, we have all this experience and if we don't do this, do you expect some 21 year old social worker to do this instead? It is a sense of duty I suppose. We have all this experience... and skills to deal with difficult children and it's something we can do. It feels like the right thing to do, it is a challenge...

Fred: We were nervous at first, it was one thing being a teacher in a school... but being a foster carer takes it to a whole new level. In school you're in a different environment, with the help and support of your colleagues. Fostering Joe, having Joe in our house is very different. You give up a lot of privacy in doing this. But we're coping, the social worker is always in touch with us, we're being paid for this...

Anna: (Laughing) Not enough! But you know, nobody becomes a foster carer for the money. It won't make you rich. It is a calling, you do it because you want to help, it is a sense of duty. It is not a choice we take lightly.

Fred: Like teaching.

Anna: Yes, very much like teaching.

Limpeh: How does your teaching experience help you in your current role as a foster carer?

Anna: There's so much one can learn from experience... I remember the first time I had an autistic child in my class years ago. It was a steep learning curve - I had to speak to parents, social workers, doctors, I had a lot to learn in a short time. But yeah, now I can cope very well with autistic children... children with all kinds of disability. It's nothing new.

Limpeh: So tell me about Joe. What is he like?

Anna: Where do I begin. (Laughs.) He's a big boy.

Fred: He's big. He's very big for his age.

Limpeh: You mean he is tall?

Fred: No, I mean he is severely overweight, very obese. You can blame his mother for that - she is morbidly obese. She had a whole string of psychological problems - the OCD was the tip of the iceberg, thus she took to comfort eating - I have seen the way she can polish off a whole big tub of ice cream in one sitting and I was thinking, "that would last my family a while and she ate that in ten minutes? Oh and she's reaching for the chocolate cookies now..."

Anna: That is a form of abuse you know? When parents neglect the health and diet of the child. You need to feed your child properly, she can eat what she wants but her child's diet is her responsibility as a mother.

Good diet = good parenting.

Limpeh: But she didn't know any better, did she?

Anna: What can I say...? Joe didn't participate in any exercise until he came to us, because he was so difficult to control, the PE teacher at the school gladly let him skip PE because he would disrupt the whole lesson. We tried to get him exercising... but it was a challenge to get him started since it was all brand new to him and he hated it.

Limpeh: How so?

Fred: He has no physical co-ordination. I tried to throw him a rugby ball and he was standing about ten or twelve feet away (approximately 3 meters), he couldn't catch it. He sees the ball coming at him and his reflexes just aren't there to react in time to reach out to the ball and catch it. Likewise, trying to get him to kick a football - his brain just can't process what he has to do, where he has to move to foot in order to propel the ball in the right direction. If you've never ever had to use such motor skills in your life before, starting at the age of 13 is a challenge. At times, it is like teaching a baby how to walk... I have seen 2 or 3 year olds who are more coordinated than him.

Limpeh: Well if can't he catch a ball or kick a ball, I can see why he dislikes sports.

Fred: So I thought we'll start with something basic - he can walk. Good, so let's go for a walk in the park. As we got to the park, he starts complaining that his feet really hurt and I looked at my watch - we had been walking for like seven or eight minutes. I thought it was ridiculous, so it was time for a bit of tough love and I said, "we will press on, you'll be fine." Five minutes later, he starts to limp and then he cries. At that point I thought, oh shit, maybe he really can't walk. Then I thought since he was limping, I had better check his feet. Guess what I found in his right shoe? He actually had two small rocks stuck in his shoe - they must have already been in his shoe when he put them on and he had been walking all this time with the rocks in his shoe.

Anna: Somehow for Joe, he couldn't put two and two together in his head - it seems like the most normal thing for us to figure out: there's pain in my foot, there might be something in the shoe, but for Joe, we have seen how he has trouble relating to his body, understanding the sensations in his body, making sense of it. Never mind, trying to catch a ball thrown at you, he couldn't even figure out that it was the stones in his shoe causing him the discomfort as he walked. That is a form of disability called dyspraxia - the organisation of movement is impaired and his brain just cannot process the information that his body is trying to send him. It's a lot more than being clumsy or uncoordinated. Once you understand what dyspraxia is, it explains a lot in Joe's case because a lot of people would just call him stupid or clumsy when they see someone like that.

Fred: I felt really bad about the stones in his shoes, so I said okay, let's get you an ice cream.

Anna: (Laughs) I remember this really well.

Fred: Joe loves ice cream and we thought it would cheer him up. He was so focused on eating the ice cream, he crashed into a lamp post. We were just walking and talking, you know, as one does when one gets an ice cream in the park and he walked right into this lamp post really hard. I just heard this loud crash and Joe was on the floor with this nasty bruise on his forehead and I thought, that's it - that's the end of us as foster carers, we can't even take the boy to the park for a walk without damaging him. I felt so bad, what have I done?

Anna: But such is the case with dyspraxia you know - some things we take for granted like we can eat an ice cream and walk at the same time, even carry on a conversation, Joe can't. So we learn the limitations of Joe's physical ability and we adjust our activities to his limits. The thing is that it's not like someone in a wheelchair or missing a limb - you can't see dyspraxia so it's only too easy to try to make him do what other normal children ought to be doing. Add that to his autism and it is a double whammy - it's a lot for the poor boy to deal with.

We have been making a real effort with the exercise - which is limited to short walks in the local park and changing his diet so that he has regular, healthy meals. No more junk food. He observes a regular sleep pattern. We are seeing small improvements in his health at least, he has lost a little weight, he can walk further now and his stamina has improved. It's small things here and there... but they all add up.

Fred: But every time he goes back to his mother, he puts back on the weight he has lost as she gives him all the junk food he wants. We are trying to work with her but it is not easy.

Limpeh: Let's talk about his autism. How is he coping at school?

School can be challenging for autistic teenagers. 

Fred: Better than one might expect actually, given the first impression one gets when one meets Joe. His problems aren't academic, it's the other things in life. Basic things like personal hygiene. He has no concept of personal hygiene, it's so bad... he doesn't wipe his bum after going to the toilet and nobody has dealt with that until we came along.

Anna: Autism and dyspraxia aside, he isn't stupid per se. Not at all, he is a bright boy.

Limpeh: Yes I know! When I was in Singapore recently, I had a look at my autistic nephew's homework and I was surprised that it was of a very decent, very respectable quality. He was writing these long, complex sentences in English, that exceeded my initial expectations. I was impressed, really.

Fred: The main challenges are to do with his behaviour. I remember walking with him to school and he saw this group of older students who were more or less minding their own business and he yelled at them, "What the fuck are you looking at? Fuck you! I will fucking kill all of you!" I was shocked. I took him aside and asked him why he shouted at them like that, without any provocation at all. He said that he thought that they might stare at him because he is so fat and people always stare at him because he is different - so he just assumed that even if they haven't stared at him yet, they will eventually. His brain then jumps two steps ahead and reacts to a stare that hasn't even happened and before you know it, he has already opened his mouth and shouted. Classic Asperger's syndrome.

Anna: Most of us have the ability to reason - we may feel the same kind of anxieties and worries that Joe does in awkward social situations, but we do not just lash out like that. We stop and think, then we think and contemplate some more, consider the different options and ask friends for advice before we do anything. For Joe, everything is a knee-jerk reaction and he acts before thinking of the consequences. He can say or do the most appalling things and we know he doesn't mean it, he isn't capable of malice the way others are. Those of us who understand him are willing to give him the benefit of the doubt but not everyone in school understands him, unfortunately...

Fred: A few weeks ago, Joe actually punched another student because that student was laughing at something funny someone else had said. Joe, being Joe, thought that this student was laughing at him and before verifying what he was laughing at, Joe just punched that girl in the face and broke her nose. She is so petite and Joe is so much bigger than her. Oh boy. When he realized he had made a terrible mistake, he was so scared and apologetic but the harm had been done. The school is worried about the safety of the other students if Joe is going to go around punching people in the face, breaking their noses like that and we had to beg and plead for Joe not to be expelled. Changing schools now and plunging him into a new environment is the last thing he needs.

It's tough for him in school. All the other kids are afraid of him after he broke that girl's nose, they run away when they see him, they don't want to speak to him, they don't even want to sit near him in class because they're afraid of getting hit. And here's the thing about Joe's autism - he cannot read the emotions of those around him, he can't empathize with others. So even after someone gives him the cold shoulder and ignores him, he would still go up to them and talk to them as if they're his best friend, blissfully unaware of how they may feel. The adults in the school understand that he is autistic - the children don't understand, they just call him crazy, psycho.. At least they are mostly just leaving him alone and avoiding him - I know of other autistic kids who were bullied really badly in school. I don't know just how fully aware he is of the fact that he has no friends in school - but you know, we don't expect to change him overnight.

Limpeh: Well, if he was physically abused by his mother as a young child, then I can see where he has picked up this from - she has set a very bad example for her son.

Fred: His mother was a bit of an oddball to begin with anyway, so there were things which she just didn't get right. Joe is 13 yet she still dresses him as if he was 5 or 6, I say, thank goodness for school uniforms so at least the children at school don't see the way his mother dresses him. Thankfully, we still have some of our son's old clothes in the house and we have given Joe a lot of our son's old clothes so at least he can walk down the street, go for a walk in the park, without sticking out like a sore thumb or attracting attention for all the wrong reasons.

Teenagers often want to fit in and get along with their peers. 

Limpeh: There is a difference between someone making a conscious decision to be a unique individual and standing out from the crowd and someone like Joe, who clearly isn't aware of how or why he is different from everyone else. School can be tough - there are times when you just want to get along and fit in...

Anna: Joe has to learn the rules of society, about what is acceptable behaviour, about what he needs to do in order to get along with others around him. His mother has not been in a position to help him learn all those rules, so as foster carers we are trying our best to teach him, educate him and help him learn. Children like Joe need a lot of help and Joe has had the late start in this process - it is not a hopeless case, we have seen some progress in his behaviour and sometimes I just think, why didn't anyone help this poor child years ago? Why did we have to wait till now before someone stepped in and help him? What about when he was younger, you know...?

Have social services been ignoring Joe's needs? 

Fred: To be fair, social services have been involved from the beginning but some of the social workers simply do not have the right skills to deal with a child like Joe. He needs a combination of understanding and tough love - he needs boundaries. The social workers will treat him like some endangered animal and just give him anything he wants to make him happy, without making any effort to try to teach him the vital life skills necessary for him to eventually integrate into normal society. They mean well of course, but they did not help him appropriately. Making Joe happy and helping Joe develop isn't the same thing - they don't think about what he needs in the long run.

Limpeh: What do you get out of this experience? Does Joe understand what you're doing for him?

Anna: I would always caution people about this - you don't expect rewards. Oh you can't expect anything in return! You can't expect people to turn around and say thank you or well done, no no no. I've been a teacher long enough to understand this - it's too vain to expect people to notice just how noble or wonderful you are and appreciate you, put you on a pedestal, give you an award or a gold medal for the humanitarian you are - that's never gonna happen. You cannot and must not expect others around you to give you that kind of approval, that's just such a vain and stupid thing to do and you'll be setting yourself up for disappointment like that.

What do Anna and Fred get out of fostering?

I accept the mission as a challenge and when I can see Joe improving, I feel a sense of achievement and satisfaction and that is something I give myself. I look in the mirror and say, "well done Anna" and I give myself a pat on the back, knowing that I have done well. That's it, that's enough for me. I don't need anything from anyone else, I don't want anything from anyone else and that is the way it has got to be.

Fred: Anna is right. I remember this problematic student Anna and I went out of my way to help about ten years ago, she had a broken family, her parents didn't take any interest in her, the other teachers all gave up on her and we were the only two adults in the world who gave a shit about her - we saw that she wasn't stupid, just troubled. So we went out of our way to help her get her life back on track and you know, we couldn't have done more... Then we ran into her a few weeks ago and we said hello to her as we recognized her immediately and she could barely remember us. She couldn't even remember our names, she just remembered that we were her teachers once upon a time, a long time ago. And I was so angry at first, you know, because we don't expect anything in return but for her to barely remember us like that? It was a slap in the face, the way she forgot everything we did for her.

Anna: There will be people like that - but as teachers, we got used to it. We teach because it is a mission we have accepted, it is a challenge that we wake up in the morning, ready to undertake. We don't do it because we expect people to love us for what to do, we do it because we chose to do it. The same is with fostering, Joe and his mother are incapable to fully understand what we're doing for Joe and yes I do feel that Joe do take us for granted at times. Unlike the social workers, we don't always give him what he wants if what he wants is more fast food or junk food - we have to say, "no you can't have chips or chocolate, you will have a salad and some fruits" and then he looks at us like we're the most evil people in the world, he could scream, cry, curse and say horrible things to us. It is testing, it can be difficult and if I lived for his love or thanks, oh please, I would have died a long time ago.

What do foster carers get out of the experience?

Limpeh: I do understand Anna. Oh I totally understand what you mean! I have an autistic nephew and I can understand what you're going through. What really pisses me off big time is the way people who have no experience with disabled people misrepresent the situation to make themselves feel better...

Fred: How do they do that?

Limpeh: Let me give you an example, there's this older woman who knows little about autism, she just knows my nephew is disabled. But to make herself feel better, she tells me crap like, "I am sure they will find a cure of it" or "I am sure he is compensated in some other way, like his brain will be gifted or super talented in something else." Or "I am sure he is a really sweet kid whom everyone will understand and love..."

Anna: (Laughs) Then she ought to spend a few hours with Joe.

Limpeh: She has absolutely no basis to make those suggestions, but she says them anyway not to make me feel better but to make herself feel better - because the ugly truth is that there are some kids who are born with some pretty nasty disabilities and there's no kind god out there to help compensate these kids in any way in life. These disabled kids like Joe really need help and when stupid people make assumptions that they are 'compensated' or even 'gifted' in a different way, then they give themselves the excuse not to need to help people like Joe.

Like this woman once said, "blind people have better hearing because they can't see, so they rely more on their hearing so their hearing become better". That has no scientific basis whatsoever, there are blind people who have really bad hearing - it is about the brain making the most of what sounds they can hear to help them but it doesn't improve their hearing at all. That woman has also seen pictures of poor children in Africa living in mud huts and said stupid shit like, "yes but look, they are happier because they don't have to worry about modern things like mobile phones, Facebook and mortgages". Yeah right, instead, those ten year olds are not in school and are working in factories to feed their families and suffer severely from malnutrition - are they really happier? Stupid people make such fucking stupid assumptions just to imagine that people who need help are compensated in some way when there's no fucking kind god out there busy compensating disabled kids like Joe or poor kids living in mud huts in Africa.

Anna: Sadly, that woman you've just described, well that's only too common. It is just plain ignorance. Send her to me and I'll let her spend an afternoon with Joe and Joe will change her mind I promise you.

Limpeh: What are the long term plans for Joe?

Fred: Long term! No, we're just taking it a year at a time, we'll see how he is coping in his school, we are seeing minor improvements with Joe. Eventually we want to see him blossom into a reasonably well-adjusted adult, able to fit into society as a functioning adult - you know, how down a job, develop social relationships, do what everyone else does. I would hate to see him be just classified as a nutjob, too disabled to work and be placed on benefits for the rest of his life. He isn't stupid, he has his moments of clarity but there are just so many things we have to try to teach him before he can get to the point where he can use what intelligence he has in a productive manner. That's our mission.

Limpeh: Do you intend to foster other autistic children now that you've had this experience with Joe?

Anna: Let's take it one child at a time - Joe is enough to keep us busy for a while! And on the days when we don't have him, we can actually relax and unwind a little... Fred and I are not young anymore you know. We are motivated and determined to help - but there's only so much our bodies can take at our age. We're in our 60s, that's why we're retired and now caring for Joe... it feels like we're working again, it is just a different job.

Fred: We have actually been approached to foster another autistic child and we do have space in the house - but I am just more concerned about the dynamics between Joe and another autistic child in the same house. Maybe it will work out just fine, maybe they will fight... Right now, I feel like we're in control because it's just Joe and us - but put another child in the mix, I'm not sure if that is the best thing for Joe or the other child?

Limpeh: Fred and Anna, thank you so much for talking to me today. You two are an inspiration.

Anna: You're welcome.