Emma Noble is a famous model and actress. Harry, her son, is autistic.
Read the heart-touching story about Emma and her battles to find a secondary school that Harry can go to when he is older.
Good luck to Emma and Harry
My background
I have worked with children with autism for the last eight years. In 2007 I started working in an independent school which catered for students with autism and profound learning difficulties. As a Deputy responsible for Communication my great challenge was to explore which communication systems we should be using for each of our students depending on their particular level of development and individual needs.
I was very familiar with the use of different visual approaches to support communication and understanding but I was still very sceptical about some of these as my previous experience had showed me that some students made very little progress with these systems and that, although people with autism tend to benefit from visual structured systems, some of the systems that are commonly used in many educational settings do not seem to help students make sense of their environment and become independent learners.
My challenge
I was therefore using a combination of communication systems for our students, based on my previous experience working with people with autism and in collaboration with members of the education and care team. Some strategies that we implemented were effective and did help students but I always had these questions in my mind:
- Can we help students communicate better?
- Are we getting these communication systems right?
- Should it always be a case of trial and error?
- Is there any tool in the market that gives us evidence in which we can base our programmes?
The work with some professionals was also difficult at times as, without formal assessments being used, some challenged the recommendations made. Why would my recommendations about communication be better than their own ideas? What were my programmes based on? As a Speech and Language Therapist I needed an instrument that could be used with these students who were either non verbal or had very limited verbal communication and for whom the majority of the assessments tools in the market were not appropriate.
The ComFor
In 2008 Professor Rita Jordan visited the school. This was a fantastic opportunity for me to discuss the nature of our students and their communication needs with a specialist on the field. Her advice was that I should do some research on the work that Professors I. Noens and I. van Berckelaer-Onnes were doing at Leuven.
I was so pleased I might had found the answers I was looking for that soon after my meeting with Professor Rita Jordan and having discussed the issue with the Centre Director of the school, Mr. Guy Olivier, I eagerly started doing some research on the internet and found out that Professor I. Noens and I. van Berckelaer-Onnes were using an instrument called ComFor that had been developed at the Catholic University of Leuven.
The ComFor (Forerunners in Communication) is an instrument to explore underlying competence for augmentative communication. It is suitable for children and adults with a developmental level between 12 and 60 months and who have very little or not verbal communication at all. (I. Noens, I. van Berckelaer-Onnes, R. Verpoorten & G. Van Duijn, 2006).
In order to administer the ComFor you must be a Psychologist, Psycholinguistic or a Speech and Language Therapist and must have undertaken the compulsory training. In January 2009 I travelled to Leuven and did a three day training course on the ComFor at the Catholic University of Leuven.
This training has been one of the best courses I have done recently, if not the best. The ComFor was exactly the tool I was looking for and it has enabled me to assess all students in the school and base my recommendations on data and evidence, rather than on my own “instinct”.
The training I undertook gave me the skills to use the tool effectively but also, after completion of some case studies which I am planning to publish shortly I am now qualified to deliver training to other professionals who are interested in this unique clinical tool.
So why do I think the ComFor is so unique?
First of all and as mentioned above, the ComFor provides us practitioners with the data we need to make informed decisions and plan appropriate programmes of intervention.
The administration of the ComFor is highly structured and very suitable for students with autism. I have personally found out that even students whose behaviour can be very challenging at times and who find it hard to focus on formal and not very motivating tasks, tend to respond very well to the structure and repetitive nature of all the items of the ComFor.
Although it depends on individual students, it is normally possible and in fact recommended to administer the ComFor in one session only.
The interpretation of the results provides with data to make informed decisions about two important issues (Verpoorten, R., Noens, I., van Berckelaer-Onnes, I, 2008):
- Which are the most suitable means to augment that particular person’s communication?
- At which level of sense-making can the means chosen be offered?
I have written reports for all the students that I have assessed using the ComFor and found their performance during the test and their data very useful to write intervention programmes. I still find using the ComFor fascinating and findings about students still challenge my own thinking at times and also the preconceived ideas of other professionals involved in the education and/or care of students. This tool helps me reflect on students’ communication, it helps me understand their behaviour and it helps me put appropriate strategies in place to help them communicate and function better in a world that, without that support would be very confusing and unstructured for them.
In general teachers have responded very well to the new recommendations and individualised programmes for all students. The fact that we are now basing those on evidence and that I video record the administration of the test so that we can together analyse students’ performance has been very useful for all of us.
We have changed practice and… let’s admit it, changes can be very hard for people without autism! But it is exciting feeling that we are on the right track and that if our non verbal students could talk, some of them might be saying “Thanks. You are starting to get it right finally!”.
My future plans
In September 2009 I took a new job in a mainstream school. I continue to work with a small caseload of students with autism, but these are children with high functioning autism or Asperger.
However, I am still committed to help all students communicate better by using the appropriate strategies. In addition to my permanent job at the school, I am offering my consultancy services to parents/carers and schools of children with autism and/or severe and profound learning difficulties. I also provide support to professionals who are interested in using the ComFor.
Please, do not hesitate to contact me if you need further information.
The Importance Of Communication
Some parents and professionals in contact with people with autism frequently mention how difficult it is to communicate with people with autism. Others are not aware of the significant communication difficulties that people with autism experience, but do suffer the consequences of communication breakdowns.
I have worked with both professionals and people with autism for over ten years and would like to share some recommendations to facilitate the very complex communication process between both. I hope you will find this information useful.
What Happens When People With Autism Don’t Understand?
When we speak with someone with autism and they do not understand, it is likely that we will observe the following behaviour/s:
- They do not respond to our request/s
- They do something apart from what they have been asked
- They get anxious and stressed as they feel they are not fully understanding what we are trying to tell them
- They display challenging behaviour
Why Might People With Autism Not Understand?
- Attention difficulties. People with autism might find it difficult to swich their attention from one stimulus to another. If they are focused on a particular task and we give them instructions, they might not be able to quickly switch their attention to us.
They can also find it hard to discriminate what stimulus they need to pay attention to. This means that if for example two people are talking at a time, they might find it hard to discrimiate our voice over the non-relevant one.
Additionally, people with autism can have short attention span so might struggle to proccess long instructions.
- Environmental distractions and noise level can make it very difficult for some people with autism to focus on our messages.
- Memory difficulty
- …or it might be their level of clinical understanding. Some people with autism have significant language difficulties so will struggle to understand complex language.
To Be A Good Communicator You Should…
- Reduce the amount of talk
- Use single words or very short functional phrases to increase students’ level of understanding
- Map words exactly onto aspects of the situation in hand
- Create a calm learning environment
- Support verbal instructions with visual material such as objects or pictures
- Make the environment visually and auditorily simple. Avoid any unneccesary language, noises and visual clutter which will make it very hard for people with autism to focus and concentrate on the relevant information.
- Give people with autism time to take in questions/instructions and to work out their response. People with autism need longer to process information so it is important that you give them the necessary amount of time to both understand what you have told them and to appropriately respond to your instructions
- Repeat instructions using exactly the same words. If despite of giving the person with autism enough time to process the information, he does not respond to it, it is important that you repeat the instructions using the same words again. If you change the words you will cause confusion as the new sentences will not be identified as meaning the same and the person with autism will need to start the decoding process again.
- Never force eye contact. Establishing eye contanct seems to be the norm between people without autism. However, this is just a conventional rule that does not suit the needs of people with autism who might find eye contact too overpowering. Some people with autism find it really hard to establish eye contact and focus on the auditory stimuli at the same time so do not ask them to look at you while you are talking to them if you want them to understand the message!
- Respect students’ personal space.
- Position yourself sideways on and so that your eye level is below theirs.
- Never fill in silence with small talk. People without autism can feel unconfortable in a social situation when noone talks. However, silence is actually very imporant for people with autism as it enables them to process information before they can respond.
- Listen, accept and respect
- Repeat target words several times to give them a fair chance of understanding
- Observe the person with autism and become aware of the things they do which are communicative or potentially communicative and respond appropriately
- Create highly interesting activities for them.
- Never compete with other adults. If more than one person are interacting with somebody with autism, decide who is talking at each particular moment.
But Remember…
Each individual with autism has his/her particular strengths, weaknesses and needs. Although I have given some general recommendations which tend to be good practice when working with autism, it is important to always follow the recommendations from the speech and language therapist for each particular student.
If you require further information, please visit my website and contact me.
Autism and massage
People with autism may lack awareness of others. They can experience anxiety around others and as a consequence, the world around them may seem bewildering and they will experience difficulties making sense of it and appropriately interacting and socialising with people around them.
Furthermore, some people with autism have indeed difficulties regulating their own emotions. They will present as individuals with “immature” or unconventional behaviour patterns, aggressiveness and/or frustration and lack of self-control, especially when in overwhelming situations or environments. Whereas some people with autism will overreact to external stimuli, others will lack response to these same stimuli.
Therapeutic massage is a useful technique to provide people with autism with the sensory input they crave. Additionally, it helps them build positive relationships with other people and increase their self-belief and well-being.
Helping people with autism manage their emotions
Different strategies and activities should be planned in educational and therapeutic environments with people with autism to:
- To help them make sense of their bodies
- To help them understand their emotions and others’ emotions
- To help them express their feelings and emotions
- To give them strategies the can use to manage their emotions
Developing an understanding of emotions
In order to increase people with autism’s insight, professionals will have a crucial role. They must be alert and identify the physical signs that the person with autism might be experiencing even though he/she (the person with autism) might not even be aware of them.
It is therefore the professional’s role to identify these signs and to label them, thus contributing to the person with autism’s body awareness and insight. We will hear professionals making comments such as:
- “Your hands are sweating”
- “Your face feels hot”
Expressing feelings
At this stage the aim is to teach people with autism the conventional labels that are used to describe the occurrence of certain physical signs. The complexity of the labels used will depend on the development stage and on their language levels. Professionals will be using statements such as:
- “You are feeling angry”
- “You are feeling upset”
With higher functioning students qualifiers can be used to express the intensity of the feeling
- “You are feeling very angry”
- “You are feeling quite upset”
At this stage, we are helping people with autism make connections between the physical signs (what their bodies feel like) and the label attributed to that emotion.
My body feels (…) This is called (…)
At a later stage, more information will be incorporated, providing them with a more accurate representation (a bigger picture) of what is happening to them. Professionals will be gathering as much information as possible about the environmental situation which might have caused a specific emotion or emotion on the person.
Situation A happened My body feels (…) This is called (…)
In order to obtain the necessary information professionals will use reports from other professionals/related adults and will listen to the person with autism’s input. Comic strip conversations and graphics can be drawn on a flip chart to visually represent the situation.
Managing feelings
Once the person with autism has got the body awareness and insight that enable them to identify different feelings and emotions and once they have certain competence to express these feelings, we will focus on teaching them strategies to effectively manage these emotions.
On one hand, at this point they will have enough insight as to recognise pleasurable emotions and will have to be supported to increase their self-belief and control to increase the frequency or intensity of these emotions.
Professionals have made them aware of the links between a situation, body awareness and the appropriate label.
Situation : “I am having a massage”
Body awareness “My muscles feel soft”
Label: “I feel relaxed”
We have now given people with autism the confidence and self-control to know that they can choose the option that enables them to reach their state of well-being. They have also learnt that people around them can and want to help them achieve this, hence the importance of establishing positive relationships with others.
Professionals will continuously be reinforcing the idea that it is ok to need help from others and that asking for support is completely acceptable and, indeed, desirable.
On the other hand, people with autism will also need strategies to positively control their “negative” emotions, such as their frustration or anger. They tend to have difficulties making links between past experiences and present situations and therefore having the necessary insight to effectively manage their emotions, having the self-belief to actually know that they can put these strategies in place and having the competence to positively relate to others and ask for support can be a long process, hence the importance of professionals’ perseverance and consistency.
Introduction
Children with autism have the right and capacity to grieve. As they spend the majority of their time at school, teachers and staff members will be their primary source of care and support and therefore should be trained to enable them to complete the tasks of grieving in their own way and in their own time.
It is almost inevitable that a centre will, at some point, have to deal with a death that affects its community. Most commonly this will mean an individual pupil experiencing the death of a close family member, but it may also be a death of a child at the centre, or of a staff member.
Bereavement and autism
People react individually to grief, but most people share certain reactions.
Because people with autism have difficulties with social interaction, it might be concluded that they do not form attachments to other people, and are therefore insulated from the grieving process. In fact, they can be deeply affected by the death of someone close. Research shows that:
- all people with autism react differently to bereavement
- they may share the “common reactions to bereavement” and may be affected by the major determinants or reactions to grief
- they may undergo reactions similar to those of bereaved children and young people
- the grieving processes of people with autism are profoundly affected by their disabilities
The process of grieving
Many experts view grief as a process with identifiable stages:
1- Shock, denial
2- Despair, including anger, guilt, anxiety, depression, panic, appetite disturbance, sleeplessness, hyperactivity, nightmares, regression, loss of skills…
3- Recovery and acceptance
People do not experience an orderly progression from one stage to the other. These stages overlap and merge with each other (A T Carr, 1988).
Determinants of responses to grief
The major determinants of the intensity and duration of responses to grief, common to all people suffering from bereavement are:
- Closeness of the relationship
- Nature of the attachment
- Mode of death
- Historical antecedents
- Personality of the bereaved
- Ethnic and religious background (Worden, 1988)
The child’s position on the autistic continuum can affect their grieving process. Children at the end of the continuum might require detailed explanations and opportunities to explore their own concepts of death and after-life beliefs. The majority of them would probably need simple, factual explanations. Adults must be prepared to respond with flexibility, depending on the capacities of the individual.
Need for preparation
As part of the children’s right to be taught how to manage their own feelings, they should be given opportunities to prepare for loss and death. Their emotional immaturity, their high level of anxiety and their difficulties in transferring ideas from one setting to another confirm the need for this preparation to be undertaken with caution
Training for saying goodbye: endings and new beginnings
Adults need to bear in mind the importance of preparing people with autism for the losses which occur in everyday life so that having handled these “little deaths”, they become more able to cope with major bereavements.
Another common loss is departure of staff. This can provide opportunities for rituals of farewell such as parties and gifts.
Life journals
Life Journals include pictures of events in the students’ lives and photographs of family members and staff at different stages of their lives. These books, with assistance from staff, help students to understand the flow of life and of ageing. They may also help, in due course, with the grieving process
Explanation of death
It is likely that people with autism will have difficulty in understanding the three aspects of death – that is inevitable, irreversible and universal (Hollins and Sireling, 1991). However, children who have prepared with a good biological explanation, may be more able to accept and understand the concept (Shaeffer and Lyons, 1988).
Anticipated death
If death is anticipated, the grieving process tends to be less difficult for the bereaved than in the case of sudden death (Worden, 1988). However, anticipated death can lead to pre-death bereavement and it can also be a source of acute anxiety (Worden, 1988). Adults will need to consider, in the light of their knowledge of the student, whether or not they should be informed of the impending death and discuss the matter with the family before making a decision.
Management of bereavement
The decision on who should inform a child of the death should be thought through carefully. If the death is that of a family or someone close to the family, the decision of whether the child should be informed by a member of staff or a family member should be reached in consultation with the family.
If it is agreed that a staff member will be the informant, The following guidelines should be followed:
- Inform the pupils in the smallest group practicable. Use a flip chart to illustrate what has happened and how the event is affecting us. The amount of graphic support given and the simplicity of the information given will depend on students’ developmental stage and on their communication and understanding levels.
- Use conversational scripts and mantras to provide consistent information to students. For example:
- “I have sad news”
- “It is ok to feel upset”
- Children with autism will need time to process information and to verbalise their feelings and fears. Allow time for individual discussions.
- Be honest about your own feelings and experiences
- Answer pupil’s questions factually. Avoid using euphemisms like “passed away” or “lost”, etc. Use clear, simple and unambiguous words (dead, died and death) to avoid confusion
- Be prepared for pupils to say or do the unexpected
- Observe how they appear to be feeling
- Show affection and support
Use of language
Deaths have been categorised under four headings: natural, accidental, suicidal and homicidal. The type of death can have an effect on the grieving process (Worden, 1988). The first two types of death are more easily explained to a person with autism. Information available at present indicates that people with autism sometimes ask “where” or “when” a person died, but they seldom ask “how”, although staff should be prepared for them to do so. Those who ask “how” may be better able to assimilate the answer.
The cause of natural death can be explained by saying that the deceased “was very old so that his/her body stopped working” (Shaeffer and Lyons, 1988) or that “they were fatally ill and the doctor could not make them better”.
An accidental death can be explained by saying that “his/her body was so badly hurt that the doctor could not make it better so it stopped working” (Schaeffer and Lyons, 1988).
When death has been caused by suicide, the most able students with autism are more likely than the majority to ask how the death occurred. Informing them of the suicide can lead them to severe depression and sometimes suicide. It is therefore highly recommended that if a person with high functioning autism needs to be told that their family member has committed suicide, specialised counselling help should be sought.
With other students, explanations such as “they took too many pills which made them fatally ill and the doctors could not make them better” or “a train ran over them and their body was so hurt and broken that it can’t work any more” can be useful.
Much of the same advice applying to suicide applies to homicide. Specialist counselling help should be sought if at all possible.
Rituals
Children with autism should be offered the opportunity to participate in bereavement rituals. Unless they have expressed a clear wish not to participate in these rituals, staff should be prepared to enable them to view the body of the deceased, attend the funeral and attend the burial or cremation..
Staff must write social stories to explain to students what they should expect. It might therefore be helpful for staff to gain as much information as possible about the religious rituals.
Information to be included in the social stories include details about the actions of the mourners at the funeral (singing hymns, saying prayers…) and the meanings of the rituals (as much as they can be understood by the student). Students should be reminded that it is ok to cry at a funeral.
Comforting the bereaved child
The role of adults is to facilitate the grieving process by such measures as:
- being there when needed
- anticipating reactions
- listening and reading cues
- intervening when help is needed
- supplying words to help children describe how they feel
- reassuring and comforting
- explaining the grieving process at an appropriate level
- if the child accepts it, offering comfort by using positive touch, holding or massage
- ensuring that the bereaved as a calming place in which to grieve if they indicate they need it
Common reactions to bereavement
- Anger
This might be directed at the one who died, at the person who broke the news of the death, or it might be a generalised anger. Adults should enable children to express their anger without harming themselves or others, or damaging property.
- Guilt
Guilt is anger turned on oneself, but in people with autism it is often expressed as overt anger. Adults should reassure children that the death was inevitable and not caused by their own or any other individual’s actions.
- Anxiety, fear, panic
These are all common responses to bereavement. These feelings are likely to be heightened in people with autism because of the changes that almost inevitably follow bereavement, which are likely to be very threatening to a person with autism.
It is important to convince the child that they will continue to be cared for and to provide the security afforded by maintaining the usual routines of daily life.
- Depression, despair
People with autism have difficulty in understanding and expressing their feelings. Adults need to help them to do so, at a level which is appropriate for them.
Adults should be vigilant to detect and to deter, if possible, thoughts of suicide, particularly on the part of the more able people with autism.
- Nightmares
Adults should be aware of the risk of sleeplessness and also of the fact that the bereaved may have very frightening nightmares.
- Regression, loss of skills
Emotional and physical regression, increased dependency and loss of skills are common reactions to bereavement. It is strongly advised that any form of assessment of a person with autism be avoided during a period of bereavement, as it would result in an entirely “false reading”
Problems encountered in bereavement
The grieving process of people with autism is impeded by their difficulties with communication, social interaction and cognition. Some of the problems that might arise are:
1.Failure to grieve after loss
Some people with autism do not grieve after loss (Brelstaff, 1984). These few examples do not justify an assumption that they do not have a capacity to feel emotion or that if an individual does not exhibit grief in an expected way, that they are not grieving.
2. Delayed reaction to loss
Grief is often a delayed process for people with autism. They initially fail to understand the implications of their loss, but m any come to feel the impact later (Kitching, 1987).
3. Apparent failure to understand the irreversibility of death
It is normal in the early stages of bereavement to behave as though the deceased still lives or is present, and to experience difficulty in accepting the finality of death. It might be that the student’s repeated questions about the return of the deceased after the funeral and burial or cremation are their way of coming to terms with their loss. They may feel a need to check the consistency of the replies they are given or their questions may be their way of showing that they need comfort and reassurance.
4. Uncertain and inappropriate responses to bereavement
Some people with autism express uncertainty regarding how they should react to death. Others have reacted by giggling at the funeral or at the gravesite or by appearing callous and unfeeling, perhaps a reflection of this uncertainty. Some callous comments can be the result of difficulties with verbal expression.
5. Disruptive or aggressive behaviour
Because of communication difficulties, the only ways some bereaved students with autism may be able to express their grief is by disruptive or aggressive behaviour. It is important to remember that even long after the loss has occurred the students’ behaviour can be affected by bereavement.
6. Inability to request help
Because of their difficulties with social interaction and communication, people with autism are unlikely to seek support when they are anxious, depressed or unhappy. It is therefore necessary that adults intervene sensitively.
7. Inability to seek activities which may help in the grieving process
People with autism may not have the insight, motivation or experience to seek activities which might be helpful to them, and they will need help from adults to have access to them. Visual reminders should be included in their organisers.
Helping children with autism cope with loss and bereavement
I have created a pocket book which I have used with many of my students when they needed help to deal with loss and bereavement. It is a very simple booklet which has very simple language and many graphics so can be used for students with language and communication difficulties. Please, click here if you are interested in purchasing it or contact me if you need further information.
“There are no words” is the fictional story of Jaxon, a non verbal, but literate girl with autism.
Mary Calhoun Brown is a very talented writer with the ability to narrate the story of Jaxon in a very beautiful way. Her use of language to describe how Jaxon feels and sees the word helps readers understand many of the sensory issues faced by people with autism and increases understanding and awareness of this condition. This is a very educational but also easy to read and entertaining book and I would like to recommend it to people of all ages.
Thanks Mary for writing this book. I wish you all the success you deserve.
Today I would like to introduce Jeff Stimpson to all of you. Jeff is 47 and lives in New York with his wife Jill and their sons Alex (11) and Ned (9). Jeff maintains a blog atjeffslife.tripod.com/alextheboy, and is the author of “Alex the Boy: Episodes From a Family’s Life With Autism.” He also blogs for many other sites around the Net.
I would like to thank him for his contribution to this blog. I hope all of you will enjoy it.
Great Escapes by Jeff Stimpson
By far the loudest “Ooooo” I usually get from audiences when I tell them about Alex is from the bit about his leaving the apartment.
This hasn’t happened in a long while, but, like breaking a tooth on food, when it happens once it’s over fast but lives long in memory. Basically, Alex, 11, semi-verbal and PDD-NOS, had been zipping out of our apartment and down the hall as far as the elevators for maybe a few months, usually when nobody was watching.
“Go get Alex!”
“Can’t you watch him!”
Alex left the apartment – in his underwear and a T shirt; it was sort of cute – once or twice during the daytime. We would search our building for several minutes, which was really a waste of time since all we had to do was go to the basement storage room in front of our lockers, where ages ago we stashed an Elmo video. “Elmo?” Alex said as my wife Jill dragged him back upstairs.
But that was a whole lot different than when the phone rang at 4 a.m. Please God let it be some drunk guy, I thought.
“Alex is in Marie’s apartment!” Jill said.
We bolted into the living room, where the lights were on and Alex sat in front of the TV, watching Elmo with the volume low. He must have unlocked our front door and left our apartment soon after I’d gone back to sleep.
Marie, our neighbor, said Alex came in and turned on all the lights, including one she herself didn’t know how to work. Then he left.
I hung my head that morning and prayed I was still asleep and dreaming. Jill said little, but dove onto the Net to Google locksmiths and door alarms. “Alex, you CANNOT leave the apartment!” we took turns saying. We snapped off Elmo. Jill continued to tap the keyboard. Marie has daughters at home, I thought into my hands. It’s one thing for an 11-year-old boy to do this. But what happens when that boy is no longer 11 and maybe isn’t so cute anymore, either?
That morning I learned the word “elopement.” It’s something that autistic people and victims of Alzheimer’s do. I know of one boy who did this a lot. He’s 14 now, I think, and his parents have put him in some kind of facility.
So. Locks. Marie pointed out that Alex could lock us out with chain locks and deadbolts, even if they’re installed high (he’ll simply stand on a chair the same way he once, when he was two, stood on the open door of the dishwasher to reach Pringles). We’ve often thought of a more sophisticated lock on the inside of our door, but NYC fire regs forbid inside-facing key locks. Through this day we discovered that we’d need a variance from the fire department — no, the fire department told us, we’d need it from the city Department of Buildings, which didn’t answer its phone — to get a combination lock installed what amounts to backwards. “You want it how?” the clerks said in hardware store after hardware store, turning the locks upside down to show that they can’t be installed that way no matter how hard two parents stared at the Medeco displays like a couple of RCA/Victor dogs with red-rimmed eyes.
Can Alex figure out an alarm? We buy three: two tiny white jobs that stick to the jam and to the door and that when separated while ON! send their sound right through your skull like Elmo’s voice. We put one on the front door and another on the door of the boys’ bedroom, and I tell Jill to use the latter during my upcoming few nights on a business trip. We also get an alarm that looks like a micro-cassette recorder; it hangs from the knob of the front door and goes off when jiggled. Alex laughs at the sound.
I strongly believe that if we want to understand autism we must listen to people who have the autistic spectrum condition but that have also developed a good level of insight into their condition. The internet and social networks have facilitated establishing links between people and I think we should all take advantage of these new technologies. It has been thanks to this that I have come into contact with Rory Hoy, a boy from Yorkshire committed to helping all of us understand his condition.
Rory has sent me an e-mail narrating his experiences growing up with autism and all his projects for the future. I would like to thank Rory for allowing me to publish this on my blog. I am sure many people will enjoy reading it.
Best wishes for the future Rory and I hope you get in touch.
Autism & Me
An article by Rory Hoy
31/10/09
I only knew about my autism in 2003, as Mum and Dad wanted to wait until I understood what autism was before telling me all about it. They felt that I would be able to cope better if I was a little more mature and understanding. I always wondered why I was different from everybody else! I was in a special school until I was nearly 9, and Mum and Dad said I was really in a world of my own for a long time. I was late in talking and found it hard to understand what was going on a lot of the time. I went into mainstream school and really started progressing, especially at secondary school where I managed to get 10 GCSEs and 2 A levels. I still felt different and school was not always easy, but I had good support and seemed to cope all right. I’ve been very lucky with my schools as they’ve been great and have helped me a lot.
Since August 2002, I found I had a talent for making short silly films. I made quite a few and had a couple shown on BBC TV! My first ‘serious’ project was my film ‘Autism & Me’ and one that, I know, has helped countless people worldwide. I felt there needed to be something out there that was more simple and easy to see or read than all the endless books and stuff, which were hard to understand. It’s a film families and groups can watch together and hopefully they will come away understanding a little more about us. One lady said she felt she knew her son for the first time after seeing it – so I must have done something right! I get messages from all over the world about this film and I feature in lots of forums and blogs. The film is now released worldwide on DVD together with a booklet I’ve done through Jessica Kingsley Publishers (www.jkp.com) and it’s also been a great help to schools and professionals. I do often go into schools and organisations where they show my film and talk afterwards about my autism and experiences and do Q&A sessions, which is always rewarding and I meet some great people! I’ve appeared many times on British and American TV and Radio and I’ve had lots of lovely letters and praise from famous people about the film, including Stephen Fry, Michael Palin and the lovely Billie Piper! I’ve won lots of national awards for this film, including a UNICEF award, a Royal Television Society nomination, a NASEN & TES Award and a Film 4 Youth Award, which was presented to me by Film Director Guy Ritchie, who is involved in the large charity UK Youth. In fact, UK Youth have asked me to be a Centenary Ambassador for them in 2010, which is a great honour. You may be interested to see a short promotional film, with an appearance from me at the end!
http://www.epiphany.myzen.co.uk/UKYouth/UKYouthPositive.html
. A 5-minute cut-down version of ‘Autism & Me’ even popped up on YouTube via Film 4 Youth. It’s funny, as the channel’s subscribers are all there because of my film, and do not realise I have a proper YouTube account myself, which is more about my music.(http://www.youtube.com/user/roryhoymusic) .
And music is what I am doing now! I am an up-and coming Music Producer.(www.myspace.com/roryhoy) I was signed to legendary Minnesota DJ Freddy Fresh’s Howlin’ Records label in 2007, which resulted in the critically acclaimed chillout album “Cosmic Child” released in March 2008.This album is now being used as background music and is even played on some American airlines! Another more “Funky Breaks” album called “Standing On Dust” was released July this year, which sees me go into territory based on my various influences including Fatboy Slim, James Brown, Mr. Scruff, The Wiseguys and Freddy Fresh himself. Many DJ’s have picked up on my “Standing On Dust” tunes including BBC Radio 6 DJ and Actor – Craig Charles, who’s played me 3 times on his ‘Funk & Soul’ show!
At the moment, I have remixed the likes of RamSkank, Boomjuice, DJ Prosper and Dan Le Sac VS Scroobius Pip. I am also making a single for Skint Records (The label Fatboy Slim is on) who have re-launched their ‘Under 5s’ label and have a 12” vinyl EP coming out on BigM Records run by famous Mick from Mick and Marc. I am working on various singles and EPs on different labels, and I’m also working with various artists around the world, so it’s all very exciting.
I am Youth Patron of the charity ‘Resources for Autism’ and was invited to their 10th Anniversary celebrations at the House of Lords because of this. They are based in London and have also opened a centre in Birmingham (www.resourcesforautism.org.uk ) and do some great, innovative work with children and young people on the autistic spectrum.
Have I finished raising Autism Awareness? No!
My pet project since the beginning of the year is to hopefully conceive a charity single to help raise Autism Awareness. I want to do a joint collaboration with a celebrity singer along the lines of Joss Stone or Duffy. That would be just the icing on the cake!
I hope I will be able to realise my ambitions, as being positive about myself makes my dreams come true.
Rory
I am a Speech and Language Therapist and a teacher. Since I graduated in 1997 I have been working with children and adults with different types of learning difficulties. In 2002 I started focusing on children with autism and since then I have been fascinated by them. I am passionate about people with autism and day after day I have found it incredibly fascinating working with very unique individuals. I am very grateful to all my students with high functioning autism or Asperger who have taught me so much about what living with autism is. Some students can develop the level of insight that has enabled us to have discussions about what having autism is and what helps and does not help people with autism.
Do I love my job? The answer, without a doubt is yes. I would find it very hard now to work in something completely different and not related to autism somehow. However, I also feel ashamed to admit, that… I also love the fact that at the end of my working day (very long hours sometimes) I am glad that I can go home and relax. My mind frequently continues thinking about my students and I still wake up in the middle of the night trying to find answers and strategies to help my students but… I do not have to constantly live with autism.
So what is living with autism like?
Adam, a 15 year old boy with high functioning autism has told me “I have now learnt how to control it and I am feeling like a normal bloke and everyone helped me for it which I am very proud of. Now I have an ipod so I can listen to my songs to make me chill for a while. So yeah, I feel like a normal bloke, nothing wrong at all and that is it!”
I am really glad of knowing that Adam is making good progress and turning into a happy young man.
From a parents’ point of view Mary Dhonau, mum of one of my former students with severe autism, has very openly expressed what living with autism means for her and her family. I admire Mary for expressing these ideas so honestly and beautifully and I would like to invite other parents to listen to her recordings. Very emotive and direct from her heart, Mary managed to put tears in my eyes.
So… what is living with autism like? Well… I still do not know and I would like more parents and people with autism to share their ideas with us professionals so that we can improve the quality of the services we offer.
Looking forward to hearing from all of you.
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