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Miriam Grundy-Evans

This is a personal account of how difficult it is to find accurate and reliable information about autism interventions .

Please note that it is a personal view and does not necessarily represent the views of Research Autism.


I remember standing in the hallway of our home, doing the usual daily routines when I suddenly realised that my whole life was totally influenced by my son's disabilities, and he in turn was completely controlled by them. They had consumed both of us, and I had no idea how to shift the balance. My only chance of survival, physically and mentally, was to try and keep Daniel as calm as humanly possible. I tried to keep the home environment completely free of any situation which could provoke an incident of extreme distress. Some might say "just let him scream and have the tantrum", but these tantrums could occur as often as twenty times a day and last a very long time. Often resulting in Daniel displaying aggression towards himself and others. As a single parent I had no means of escape, I was on call permanently, some nights getting as little as forty minutes sleep in two twenty minute sessions.

For six years I avoided using the telephone when Daniel was at home, unless he was asleep. In reality I was too frightened to use the phone incase the situation caused an incident of accidental self harm brought on by his extreme frustration and despair. If I did pluck up the courage to make a call the screaming would be so loud I would not be able to converse at all, so it would be futile to even try. On one occasion when I telephoned his GP about another matter Daniel got so distressed he hit himself in the mouth with a toy train and fractured two front teeth! Needless to say we endured further trauma for months afterwards with dental and hospital treatment needed following this incident. So it became very evident to me that prevention was far better than a cure!

It was not just telephones I gave up for many years, the list included hairdryers, vacuum cleaners and any electrical appliance which made a noise. I became an expert on alternatives. A fax machine to contact the outside world (no computer at that time), blending food by hand with a whisk or potato masher to blend fruit etc, a carpet sweeper instead of a vacuum cleaner (I wore 3 carpet sweepers out!) and various noise free methods of drying and styling my hair. I replaced the batteries in the doorbell with part worn ones to reduce the distress it caused Daniel, the list is endless!

Like most parents I had imagined my son would develop the same as his peers that he would be able to hold a conversation and be out of nappies well before the age of five. I dreamt he would be able to put up my shelves and do other practical jobs around the home when he was in his twenties. There was no doubt in my mind that he would, as an adult, be able to hold down a job and live independently, should he wish to do so. But it was not to be. Currently, even a small outing such as taking him to Mac Donald's has so far remained a dream.

Going out with Daniel got more and more difficult from the age of eleven months onwards. His behavior had however, always been challenging. When Daniel was around two and a half I took him to the supermarket in his buggy, as I did most days, to buy a few essentials. Unfortunately, Daniel got very frightened by the strong lights, loud noises and stimulating colours, and he became distraught in his buggy, as he often did. We were in the queue for the checkout and I bent down to sooth him, feeling rather uptight myself with all his screaming, in his distress, Daniel slapped me across the face really hard. I was so embarrassed; it felt like everyone was looking at us. Leaving my basket on the floor with the groceries in it I left the store and cried all the way home. I am not sure what hurt the most the fact that we had no bread or milk, my aching jaw (which ached for four hours) or my pride. It was several years later when Daniel was seven years old that I felt confident enough to take him in a shop again. Up until that time I only visited the shops without him. I purchased all our clothes and household goods via mail order and I used to order our food over the phone, and have it delivered when he was out or asleep.

It's not Daniel who is the problem it's the Autism, how I dislike that word. Things are further complicated by the fact that he also has severe learning disabilities and epilepsy.

Daniel is a lovely boy, a beautiful face, lovely eyes and smile and an infectious laugh. The autism on the other hand is angry, aggressive, frightening and totally disabling. It gives him, a child the strength of a man, which can make it difficult for me to contain a big tantrum. At times the autism totally absorbs him.

He was very restless and agitated from day two of his life constantly crying. Between his crying I read all the baby leaflets and books professionals gave to me. I tried everything to sooth him and also tried letting him cry for a little while, but nothing worked for any length of time. Sometimes when the crying got unbearable (after say two hours of solid crying) I would run up and down the flat with him in his baby sling. This would ease the crying for a little while but as soon as my speed reduced he would become unsettled again and start screaming. After a couple of weeks I started to seek help. He displayed physical symptoms of discomfort and had terrible problems with constipation, even as a new born baby. Daniel was sick dozens of times a day and at times had projectile vomiting. One GP told me "by the time you have had your fifth child then you will know that there is nothing wrong with Daniel." Another doctor advised me to sleep him in a room further away from me so I would be able to sleep without Daniel constantly disturbing me. I could see his point, but did not feel comfortable with the suggestion as Daniel was only one month old and at that time there was no other room. Realising that the medics thought I was an overprotective mother, and did not at that time share my concerns over Daniel I decided to try and deal with things myself, as best as I could without involving the health professionals unless Daniel was sick.

When Daniel was two our health visitor started to express concerns, Daniel was always restless and he was not developing, globally, as he should despite my best efforts. I had my own concerns over Daniels development, the thoughts would keep popping into my mind, but as quickly as they came I shoved them back down again even deeper. It's amazing how we can temporally talk ourselves out of or into situations, but never feel totally at ease until we confront them. When Daniel was around four months old I played this little game where I kissed his nose and cheeks and forehead, I zoomed in with the kisses each time to make it funny, but Daniels expression never changed at all throughout the game, and this disturbed me greatly, so much that it is the first time I have spoken about it. I did not understand why it was such a big issue, it just felt wrong. He also used to handle objects for a long time, he would hold a toy or smarties tube and stare at it for what was probably two to five minutes but it would feel like hours, mainly because Daniel was very rarely quiet and still. Whilst holding the object he would slowly turn it around in his hand as if examining every part of it. At other times he would repeatedly move long objects, such as a hair comb backwards and forwards very close to his eyes and he would also look and stare at things with a sideways gaze. It must have looked very odd, but when he was displaying these behaviours it was a chance for me to grab a few moments of rare head space. Also an opportunity to chill out for a moment, and admittedly I did exploit this behaviour on occasions by giving him long objects to glare at just so I could have a bit of peace and quiet!

When Daniel eventually learnt to walk, at around seventeen months, he quickly took off and learnt how to run. He would run up and down straight lines or long objects repeatedly and would look sideways at them as he ran. Once we were at a children's play park, a rare moment in itself, and there was a rocking rocket in the park. Daniel would not get in it, but was fascinated by the straight lines of its shape, but every time children got in and rocked it Daniel became distraught; needless to say we had a lot of disapproving glances and comments and became very unpopular. I ended up manhandling him into his buggy to get him away from the park, and at the time of writing we have not yet returned, that was years ago! Fortunately, he does not do this anymore but does still like lines such as train tracks and roads
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It was so hard when Daniel was a baby I used to sleep on the floor next to his cot. He required so much attention and reassurance, that it was not worth going to bed. I remember when Daniel was about six months old I lay on top of my bed one night and prayed "please God just ten minutes, please let me be able to rest for ten minutes".

At eleven months Daniel went to a private nursery two afternoons a week. He would scream the place down most days and he behaved very differently to the other children, not interacting or joining in activities unable to carry out the same skills as the other children. When I think back it was terrible, completely inappropriate for him but it was the best I could do. No one had told me about any other options available for special needs children, and I had to have a few hours away from him for my own sanity as well as to earn a living. He attended for almost four years. On his last day he cried as much going in as on his first day. One day I overheard the manager showing other parents around. Daniel was of course crying and screaming very loudly. I heard the nursery manager tell the visitors he suffered from autism. That was two years before I got a diagnosis .I was so stunned and hurt by the comment that I pretended I had not heard it, at the time I had no idea what autism was, but I knew it was something bad and incurable.

I used the restrictions set by Daniels disability to bury my head in the sand even further. I could not go to the library to research this autism thing (no computer then) and if I was honest I did not want to know. At the bottom of my stomach was a terrible feeling which I knew meant he did have autism and Daniel would not "get better" (in the sense of cured!). Deep down I thought if I did not know what it was then he did not have it! Silly I know but that was how it was. Fortunately I have moved on since then and now I try to tackle things immediately in order to develop coping strategies and prevent myself from being in that mess again.


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Updated
02 Jul 2015