Autism and blame

Please bear with me through this post, it may take me a while to explain where I am going with this, whilst trying to explain where this has come from, and why it has had such a big impact upon my family.

I feel I need to bring this up, the subject of Autism diagnosis, the history of such diagnosis, and the history of blame. The subject has been brought up on another blog I read regualarly, My Son has Autism. I have discussed this subject and post with Kristina and it is with her permission that I link and quote from her blog, and I thank her for allowing me to do this.

Kristina brought up the subject of Autism 'experts', and the origional belief held by many 'professionals' that Autism was caused by refrigerator mothers.

Kristina says in part of her piece that :-
"autism parents are in particular need of this, in part at least to debunk the much-refuted notion of autism parents (and especially mothers) as the cause of what is a biological, neurological condition. No parent, certainly, or teacher, or therapist, or doctor, or psychologist, or school or other governmental administrator, gives any credence to the notion of autism as caused by refrigerator mothers. But cultural attitudes can last for a long time in us, albeit unconsciously, and I do think that there are many, many misperceptions about "what autism is" among the general public and even among us parents and professionals."

I am according to the family therapist we saw, one of those refrigerator mothers.

Unfortunatly it appears that this theory is still very much alive and well, amongst some of todays professionals, and I am sure Kristina will agree with me on this. There are those out there, who still hold the values of Freud, Kanner and Bettleheim to heart, and pass them to the next generation of therapists etc who then take these beliefs on board.

My son was not born in 1943, he was born in 1999, and in May 2003, some 60 years after Kanner wrote his classic article I was told that my son's problems were my fault, they were due to depression, my anger, and my inability to bond with him.

The therapist stated that I had a distant / ambivilant attachement towards Michael. She descibes me as being angry with Michael because he has destroyed any hopes I had of having a normal child, and because of this I allow any kind of behaviour including defacating on the carpet. She finishes off by saying that "it is sad that this child cannot be given the help he could benefit from because mother refuses to return for a further appointment."

Kanner wrote his "classic" article Autistic Disturbances of Affective Contact in 1943, in it he states:

"There is a great deal of obsessiveness in the family background, the very detailed diaries and reports, and the rememberance, after some years, that the child learned to recite 25 questions and answers............."

The therapist we saw described me as "clinical" Most parents of children with any kind of medical history know that history inside out, they have them burned in their minds, we know what our children have been through, we know what battles our children have faced, and in most cases we are the only ones who have the complete picture, unlike us no-one professional is there for every single part of our childrens lives.

So yes I fall into this category, I have very detailed diaries, I have all Michael's reports filed away together, I write background histories for new Dr's because it saves having to go through it all again. It's there written in black and white, does that make me obsessive or organised? (Or maybe fed up of repeating myself over and over again!?)

"One other fact stands out prominently. In the whole group there are very few warm hearted fathers and mothers." he then goes on to say "The question arises whether or to what extent this fact has contributed to the condition of the children"

The following is taken from an article The Brutality of Dr. Bettelheim by Martin Gardner

Bruno Bettelheim was convinced, in spite of overwhelming evidence to the contrary, that autism had no organic basis but was caused entirely by cold mothers and absent fathers.

"All my life," he wrote, "I have been working with children whose lives have been destroyed because their mothers hated them."

Again: "The precipitating factor in infantile autism is the parent's wish that his child should not exist."

In the mid-fifties Bettelheim adopted a policy known as "parentectomy." Under this policy, parents were not allowed to see their children for at least nine months!

You can imagine the desolation felt by mothers when they were told they had created their child's pathology. Annabel Stehli, one of many such mothers, read Bettelheim's book about autism, The Empty Fortress (1967),

Stehli described her reaction this way:

I was carrying around this terrible secret. I didn't want to talk to anyone about Berrelheim. My husband said that he thought it was baloney, but I didn't talk to my friends about it.

I was very alone. I really felt as if I had a scarlet letter on, only the "A" was for "Abuse."

I felt that I'd hurt Georgie in some subtle way that I couldn't grasp, and if I could just figure it out, then maybe she'd be okay. There was a part of me that wanted to believe Berrelheim, because that would mean that if I got better, Georgie would get better.

Stehli and I may be seperated by decades, but the feeling of being blamed for causing your child's difficulties, and the devastation that it leaves you with, are no different now than they were in 1967.

I actually considered putting Michael and his siblings up for adoption, following the session with the therapist. The Social Services dept was only a few doors down from where I had been torn to pieces......... Why?? because I believed that if I was doing them so much harm, that they would be better being raised by someone who could solve the difficulties. Someone who was obviously so much better at parenting than I am, someone who would cause them no harm.

I was not depressed when I went in to see the therapist, a little stressed maybe, but I was downright suicidal by the time I came out, funny how much can change in such a short period of time.

This therapist played on every weak nerve and feeling that I have. I still carry around a large amount of guilt because of Michael's birth, and I will admit in the early days I did not bond well with this technology dependant baby, it's not always easy to see the baby for the machines..... at the time I found it hard to believe that he would survive. Not getting too close was my way of protecting myself from the heartache that in my opinion was bound to come when he died. So yes, I have guilt over my initial feelings towards Michael; but I am aware that it was also self-preservation.

As Michael grew we developed and adapted our ways of communicating or at least trying to communicate, to understand what he was trying to tell us. It didn't take long to realise that interaction is done on his terms. If he was actually sitting and doing something we learnt to leave him, we learnt that to try to join in, usually resulted in Michael leaving. We knew if Michael was having a tantrum over a video, that we would go through half a dozen video's before finally settling on the first one.

We worked with everyone we thought could help us learn how to communicate with Michael. We learnt to speak in simple bullet points, such as "good sitting" or "good looking" we used PECS, we had pictures of objects velcro'd all over the house, we tried sign language, and I have to confess Michael is so much better at it than me.

Does that make me cold and aloof or does it make me, like many other parents of children with Autism, tuned in, or trying to be as tuned into my child as possible, without over-stepping the boundaries my child has?

The therapist, refused to accept that having been born so prematurely, and having been so sick for so long, could have had any impact on Michael's development. She refused to accept that he was developmentally delayed. This she stated was because of my inability to treat him as a 3 year old, repeatedly telling me that, "unless you treat him as a 3 year old, he will never be a 3 year old."

She alledgedly managed to see something in my relationship with Michael, that no other professional has seen in the years that we have been working together. At no point through all our difficulties, has anyone ever questioned our relationship with Michael. Whilst everyone else we were dealing with was working towards Autism -

and this is where I come unstuck..............

Was it that she could see the "Autism in my son", and she chose to ignore it?? He was 3 years old, he was non-verbal at that time, he spoke 1 word and that was 'bye' as we were leaving. He behaved no differently in that room to how he behaves at home, he was fascinated by her necklace and the stockings that she wore on her legs, moving himself between the two. He recoiled in horror when she removed the necklace.....(it's as if he thinks the head will follow! You can see the look of fear in his face) He backed off when she tried to interact with him. As with many Autistic kids, we've come into contact with, interaction is ok, as long as it is on Michael's terms.

Or was it that all she could see was me, and she didn't see my child at all??

I have to say I think, it is the latter, all she could see was me, she was not prepared to look any further than her strongly held beliefs that children's problems ultimatly stem from their mothers.

My husband, like Stehli's, thought she was talking a load of twaddle, but despite that, her words hit a weak spot, my guilt, and caused a lot of grief, a lot of tears, and finally a lot of anger.

Three months after our visit with her Michael was diagnosed with Autism, and my first question was........... "Is it my fault???"

Frustrated again!

It's been half term week around here for the last week so I haven't been able to post as much.

Friday's occasional day really threw Michael's routine to the wall, we had a difficult afternoon Friday, because he couldn't work out why everyone else was in school and he was home. F, has started going to nursery in the afternoon, which is a whole new experience for Michael.

When he goes to school in the morning she is here, when he gets home she is here, and I guess it's never figured that she too goes to school. We spent most of Friday afternoon with Michael in tears wanting F. & J. from school.

Friday evening Grandma and Grandad came down for the weekend, to celebrate F's birthday, so we had a busy weekend doing lots of different things with my parents, including another birthday party for F, (who's birthday was the 19th)...she's now 4, where has my baby gone???

Tuesday I took Michael to the Dr's to request a referral back to the surgeon who repaired his hernia's. After a battle of wills, we now have to wait for an appointment, we may be looking at further surgery to sort out his little problem of missing bits of his anatomy!! Need I say more??

Whilst I was at the surgery I asked about flu vaccinations for us all as a family...we've always all had them previously, the idea it prevents us all getting the flu, bringing it home to Michael, and also stops us from getting sick, and being unable to look after Michael.....he usually spends so much of the winter sick anyway, without the flu being an added complication. I was told that they were only vaccinating critical care and the elderly at the moment, but they would talk to the Dr about it, and to ring back later.

I rang back today to be told that my oldest could have the vaccination, because he is an asthmatic, but the rest of us were not eligible, until December time, and only then if they had any vaccines left.

After I'd put the phone down it suddenly occurred to me that Michael's name hadn't been mentioned. So I rang back, to be told that Michael wasn't eligible......... To say I was spitting with anger is an understatement.

Michael has Chronic Lung Disease - his lungs operate at roughly 35-40% capacity how can you say he isn't eligible?? My son has just spent three weeks in oxygen because of a cold, how sick exactly does he have to be, to be eligible????.

The reply was - "does that have anything to do with his respiritory system??"

I understand that Doctor's receptionist's are not Dr's, I know that they are not medically trained, I know that she does not have the same knowledge as I do, when it comes to Michael and his medical issues. But I would have hoped that working in a surgery she may have picked up some clues from somewhere, that when we are talking lung issues, that, yes we are talking respiritory system.

I did try to explain as patiently as I could, that the lungs are part of the respitritory system and as such the issues he has with his lungs should have made him critical care.

What I really wanted to do was scream...........I couldn't believe that they were turning Michael down for a vaccination that is recommended he has, by every Consultant he see's.

This is the official version of flu vaccinations as taken from NHS Direct:

Introduction

Flu is a highly infectious illness, which spreads very rapidly by coughs and sneezes from people who are already carrying the virus. The virus circulates every winter, usually over a period of a few weeks, so that a lot of people get ill around the same time.

See your GP about the flu jab if you’re 65 or over, or if you have any of these problems (however old you are):

a serious heart or chest complaint, including serious asthma,

serious kidney disease,

diabetes,

or
lowered immunity due to disease or treatment such as steroid medication or cancer treatment.

Your GP may also advise you to have the flu jab if you have serious liver disease.
If you’re the parent of a child (over the age of six months) with a long-term condition, speak to your GP about the flu jab. Your child’s condition may get worse if they do catch flu.

If you’re the carer of an elderly or disabled person make sure they’ve had their flu jab.

You should also get the jab yourself if their welfare is at risk (i.e. you can’t look after them) if you fall ill.

Ask your GP for advice.

off school

Michael is off school today, for an occasional day, he's just appeared at the side of me, waving his dirty hands and stated "why I got pooh"

Oh happy days!!

Education

Michael attends a school for children with Mild to Moderate Learning difficulties, when he first started at the school he was in the unit attached to the school, for children with Autism. He did really well in there, and it wasn't long before they were moving him out and putting him into the main part of the school.

The whole ethos of the school is to work with the children in small groups, to help the pupils achieve their full potential, and where possible to re-intergrate back into mainstream education. I have to say it is the school we wanted Michael to go to.

It was not an easy decision, the school across the road, the mainstream school, bent over backwards to accommodate Michael, to make sure he was able to access everything that they had to offer. But when it came down to it, Michael was too far behind for him to be able to work at the same rate and pace as his peer group. He would have needed and entire curriculum just for him, he would have to have been taught on a 1-1 basis and so excluded from his peer group. There were certain area's of his behaviour that caused raised eyebrows, from the staff, his ability to disappear if eyes were removed from him, being one.

It caused a lot of sole searching from us, about what the future had to offer, do we go with mainstream, where Michael may end up becoming totally isolated, and further and further behind, or do we opt for special ed, for a school that has a reputation for working wonders with it's pupils??

That is just what it seems to have done with Michael, his verbal communication has come on in leaps and bounds, his interaction is amazing. Last clinic appointment we had, his Resp commented on the difference in him now, to how he was 18 months ago, when he showed no interest in anything, other than what someone had hung round their neck.

He has a fascination for Necklaces, Name badges, anything that hangs on someone's neck, however it stresses him, if the item is then removed...He just couldn't work that out. Almost as if he thought the head would then follow.

The child I sat and discussed last night with his teacher, is a completely different child to the one who started there a year ago. His teacher tells me he's too easily distracted, but he distracts himself, if someone walks into the room he needs to know "who they are", "why they are there" if it's his turn to go off and "work." Apparently one of the other children in the class was talking to him yesterday, when the SALT walked into the room, the child who was talking to him had to ask him 3 times, and Michael had to be reminded he was talking to E. before he took any notice of what she was saying!

His teacher did tell me that his eye contact is not good at the moment, and he needs support to concentrate on what he's doing, he needs to be helped to return to the task in hand, but the good news was that he is staying in his seat, and not getting up and wandering all over the classroom, as he was prone to do when he first started in her class.

As for his writing......well that was interesting, his teacher tells me he can copy the letters M I C H A E L. But chooses not too most of the time, so one of his targets for this term is to copy write his name. His writing on the whole seems to be a series of O's. When I asked what she seemed to think that was about she tells me that "its a boy thing" But with Michael it's not an easy process, trying to think about how to hold a pencil, what he wants to write, and how to write it..too much going on all at once for his brain to process!

She tells me his maths work is age appropriate, his grasp and understanding of math's, numbers, shapes etc is excellent. I think I have a genius on my hands!!

Respite - the saga continues!!

Did I mention that our Social Worker has left?? I got a phone call a few weeks ago, saying that she was leaving, and that at the moment there was no-one to take over the case, this is where we disappear into a big hole at the back of a filing cabinet, never to see light again. Am I cynical or can you tell I've played this game before???

Anyway it appears from what she said that Michael has been assessed in school by the Respite Unit, and that they think he would fit in well, which was good news, so we go to panel sometime in November, and if they agree with a placement for Michael there we go on the waiting list for a place, so we may get a place, when one becomes available, sometime in 2006!

Vent time

Some times I wonder what is going on with our NHS, it saddens me to hear other mum's experiencing the things that we went through with Michael and the lack of support out there that is available.

It heartbreaking to hear mum's with tube fed babies talking about how there little ones are losing weight, they can't afford to loose.....the dietician left, and as of yet has not been replaced, so mum's are struggling, don't know what to do, and no-one seems to care or want to help....it all sounds so familiar.

I know there is a big Consultation ongoing at the moment, which is fine, but what they really need to be looking at is long term, the bigger picture. It's not down to me to make the decisions over whether or not micro-preemies should be saved...but I really do feel strongly that if they are going to continue then the services that follow need a good kick in the pants. A lot of these babes do not come home fit healthy newborns with no issues, a lot of them come home with lots of issues, and parents need the support and advice on how to deal with those issues, because in the long term it's the child that suffers, and not because the parents aren't trying everything in their power to get their child the best.

Physio Therapy

I had an interesting telephone conversation with the Physio Therapist at Michaels school today..

I need to explain, when Michael was younger he was referred to a physio, because of concerns about his physical development, we went, Michael was given exercises and special Piedro Boots, to help with his balance and gait issues. The Physio discharged Michael before he got his Autism Dx, mainly because at that time his communication and his behaviour issues impinged on just about everything.

When Michael came of school age, we got a written report from the Physio, who described Michaels issues as Hypotonia and Ligamentous Laxity...... (looseness of the ligaments. Children with ligamentous laxity are often "double jointed". This means they can bend their fingers, knees and elbows backwards without pain, and even rest their thumb on their forearm - something that most of us can't do.) This was about the only explanation I could find on the web. I also discovered I've been spelling it wrong for a while too!!!

Anyway can't say honestly that we've done any more about it, I guess we were working on that if it was a major issue someone would have done something.

Before the schools broke up in June I met with the Physio therapist at Michaels school to discuss his chest issues, I mentioned that Michael had hypotonia and Ligamentous Laxity and that he'd seen a physio previously. The physio at school said she would assess Michael to see if this was still an issue for him.

I thought no more about it, until the phone rang today, the Physio has assessed Michael, and his hypotonia and hypermobility.

Now this is a new word and I have to say threw me into a bit of a loop, but the more research I do the more I'm convinced it's the same thing as Ligamentous Laxity - also easier to say and spell!!! ((I am sure someone can help out, if I'm way off bat here and completely wrong!!))

Back to the whole point of this post, Michael will be getting insoles for his shoes, because his foot arches collapse, we are going to be getting exercises to do on a daily basis to strengthen the muscles in his feet, ankles and stomach.....So that little issue........I didn't think was an issue anymore..............Well it appears it is!

I haven't posted for a little while

Mainly because we've been busy trying to return the house to some kind of order, after the builders left. There has been lots of painting, decorating, carpet laying, wardrobe building, and lots of other things going on around here that have just taken up so much time recently, that I just haven't had the opportunity, or I admit the inclination to come in and update!! By the time the kids are going to bed, I'm not too far off following them these days!! I have to say I will be so pleased when it's all finished and things can go back to their proper homes, all the cardboard boxes that things are stored in at the moment have gone, and our house goes back to being our home!!

So please excuse me for having been a bad blogger recently, but I'm hoping to be able to post a bit more often and soon.

So what have we been doing, apart from lots of decorating???? Well the sponge up the nose was removed fairly easily, and the Ear Nose and Throat Dr, at the hospital was very nice about it!! So we didn't get into too much trouble for "allowing" Michael to shove sponge up his nose!!!

The children are all back at school, and F, has started afternoon nursery, which is taking some getting used to for me, because it means that she is around in the mornings, no real problem, I get her into school and as I'm getting back from dropping her off, the oldest one is home for lunch, so at the moment I have maybe an hour a day to do my housework, before I have to go and get them all from school. So I've gone from having a couple of hours a day to myself to an hour!! Does it sound bad if I say I miss that time???

Anyway, cold and flu season is here, well and truly, and has put Michael back into his oxygen at night again.....he's been back in for almost two weeks now. Starting early this year!! But faced with a choice of a little boy who is waking in the early hours and being sick, and then difficult to rouse in the morning for school, complaining of being tired and not feeling well, as he's throwing up everywhere - clearing his lungs so it's not exactly throwing up!! But you get the picture, we'll take the 02 and hope that it's not going to be a rough year this year!