Matthew Daniel gives us a personal insight into his thoughts and feelings on discovering he has autism

On the 29th March 2010, I was diagnosed with High Functioning Autism and Aspergers Syndrome. I’m not ashamed by this diagnostic action as some of the greatest musicians in the world had Autism. Mozart had it. Beethoven had it. In some respects, like how it’s cool to be black, it’s cool to be Autistic! The Autistic spectrum disorder can also be known as the “ASD spectrum” or just “ASD”. Everyday people won’t notice somebody with ASD because it’s not like having a broken leg or a bandaged arm. It’s not a visual illness, it is somebody who finds taking in information a problem and how they see the world. It is not a disability, it is not somebody in a wheel chair; it is somebody like me. Capable. Able. Bright. Creative. Determined. Brave. Brilliant…well maybe not the last one! People with ASD certainly find social relationships and communication with other’s a challenge.

Matthew Daniel

My family thought I had ASD from the age of fifteen but I denied any help because I didn’t know what it was, and it has taken until I am 23 years of age to get a diagnosis. But I am one of the lucky few that own a diagnostic report yet many people with ASD go through life without it being diagnosed. The sad thing about ASD is its monster when it comes to social issues as somebody who has ASD even after gaining high qualifications will struggle to keep relationships with their colleagues and hold down a job but fortunately for me most of my music interviews even when I was up front and told them I had ASD the majority said they couldn’t tell. ASD is a ‘spectrum’ disorder, which means it varies from person to person, and these individuals can be diagnosed alongside ASD with the following:

. ‘Classic’ Autism

. Asperger Syndrome

. High-functioning Autism

The DR’s diagnosed me with High Functioning Autism and Aspergers Syndrome, linked to my heart surgery at five years of age. My experience of ASD has caused me great depression and anxiety especially in my teenage years. For others with ASD it can affect them by experiencing Dyslexia, Dyspraxia and even digestive problems. However, I will re-affirm readers that people with Low/High Functioning Autism go through ‘triad of impairments’, which basically means they experience difficulties in social communication, social interaction and social imagination (not Pixar/Disney imagination). To go into detail about the ‘triad of impairments’ starting with social communication, an ASD person will not understand a joke or sarcasm such as a statement as simple as this “She has eyes in the back of her head” – and take it literally. As funny as this may sound to others, this actually causes a person with ASD great social confusion, social anxiety, and long-term depression. They can often have a monotonous tone of voice, and struggle to pick up non-verbal communication such as gestures, facial expressions or tone of voice and most probably misinterpret them. In some cases, ASD people find it hard to maintain eye contact, and might be considered rude to mention certain things. Now, lets go into detail about social interaction, developing friendships for somebody with ASD is like climbing the highest mountain, and specific social situations/starting conversation is often a difficulty. As silly as this also might sound someone with ASD might not even pick up when somebody is not interested in what they are saying! Social imagination, ASD people find it a challenge to put themselves in other people’s shoes. ASD people may be extremely talented in a particular area rather than be good with spontaneous situations/every day life. The list is endless of the negatives but there are ways to over come this complex mental health issue.

The National Autistic Society is out there to help, support and provide employment opportunities for people within the Autistic Spectrum Disorder. They run a programme called Prospects Employment Service, which can provide more information about options in employment and voluntary work in your local area! Below, please find an interview with Deidre Howley of Kings College London; she works in the research department at Kings College for families and those within families who suffer from Autism.

Interview with Deidre Howley of Kings College London

What is your role in the working world in terms of helping people with this condition?
I work as a Research Assistant on a project funded by the Department of Health. The project aims to explore the unmet needs of young people with ASD, and the needs of their parents/carers. So I visit families in their homes, and take a series of measures (through an informal interview). I look at indicators of physical and emotional health, service use, service needs, and the specific qualities of the individual’s autism. At the end of this research (it is a 2 year study, and we aim to recruit 80 families) a document will be formed and sent to the Department of Health. This way, people with ASD, along with their parents/carers, will have their voices heard and in turn, inform service development in the near future.

How does Autism vary from person to person?
Autism can vary due to a variety of reasons. Firstly, it depends on where somebody is placed on the autistic spectrum (which I will refer to in more detail on question 4). Briefly, a person may be classed as having high functioning autism, or they may be placed at the lower end of the spectrum (where some people describe this as ’severe’ autism, due to sufferers having a significantly low IQ). It is common for people with autism to experience comorbid conditions, such as learning disabilities, epilepsy, ADHD or ADD, anxiety related disorders, depression or symptoms of psychosis. To answer this question more generally, it also comes down to the individuals personality and circumstances. For example (using fictitious examples and names): Jen is 13 and has high functioning autism. She is not receiving appropriate support in school, and is falling behind in her classes. Her family and friends do not know a lot about her condition due to a poor amount of input from professional services. Jen has a predisposition towards low mood states. Due to the external factors surrounding Jen, she may experience low self esteem, underachievement and a lowered general well-being. So this is how her ASD affects her due to the combination of external factors. So lets now take the example of Sam, a 23 year old male with autism and severe learning disabilities. He had a key worker who unfortunately couldn’t identify how he communicates preferences. Sam used to vent his frustration by not eating or soiling himself. Since a social worker placed a new, skilled keyworker to spend time with Sam, he no longer refuses to eat, and his communication through MAKATON has improved dramatically. NB Makaton is a basic level of sign language, used in the learning disability field.

What made you want to get into working with families and those who have Autism?
From a very young age I always wanted to help people in need. I also took a huge interest in people and how we all communicate differently. I therefore studied a BSc in Psychology. I quickly realised that I was interested in developmental conditions. I began working for a charity supporting children and adults with ASD. The satisfaction from such work made me realise that this is the area where I can give 110% and be an advocate for young people peoples rights.

Please tell us all the different forms of Autism?
Autism is now referred to as ‘Autistic Spectrum Disorder’ or ASD. This is an ‘umbrella’ term, and it therefore is generic, and encompasses the types described below:

01. Autism

02. Asperger’s syndrome.

03. High functioning autism.

High functioning autism differs from Aspergers; those diagnosed with Asperger’s syndrome typically will not have experienced lowered language development when they were younger. The National Autistic Society increasingly suggest the ‘Pathological Demand Avoidance’ (PDA) syndrome is part of the autistic spectrum. It will be interesting to see if PDA is included under ASD in the next Diagnostic and Statistical Manual (used and created by Psychiatrists and Psychologists). Autism and learning disabilities would be clinically described as ‘Autism with comorbid learning disabilities.’ So, for people suffering with autism and an anxiety disorder (for example, OCD), again, this would be ‘autism with comorbid OCD. PDD-NOS (Pervasive Developmental Disorder not otherwise specified) is sometimes called atypical autism. Many leading researchers and experts argue that this is not included in the ASD definition.In my department, some researchers have been discussing the possibility that Asperger’s may indeed be taken out of the ASD definition and treated as a separate entity. People I work fairly closely with, think that this should not happen. Again, this is an area of interest to keep an eye out for!! And the implications would be interesting too, if that did happen.

What is the worst experiences/best experiences you’ve had in dealing with people that have Autism?
Best experience: Learning MAKATON sign language to communicate effectively with a young child with autism and severe learning disability. As he got better at recognising signs (along with an improvement within myself, at using makaton), his challenging behaviour decreased over time, and his school teachers were very pleased with how much happier he was at school. Worst experience: Being at a care review meeting, putting forward my support, to obtain a male keyworker for a particular teenager (who was very strong and tall, and did not have any awareness of danger). As this case caused a lot of debate, the teenager did indeed, run infront of oncoming traffic (when he was in my care) and almost had an accident. I was very young at the time, and couldnt physically restrain the teenager from running away. Luckily, this experience created an emergency review about the future of his care. And various safety techniques were put forward for the family to use.

How long have you been working in the ASD department?
I have been working as a researcher at the Institute of Psychiatry,Kings College London, for one year. I previously worked at a charity for people with autism between the ages of 20-25.

Can medication vary for somebody who has Autism or does every one with Autism take the same medication?
No. It is extremely individual. For example, some people may take melatonin to assist with sleeping problems. Some people may take risperidone to help them feel calm, if necessary. Some people may take aripiprazole to combat symptoms of psychosis and depression. People with autism and severe epilepsy may take epilim to prevent seizures. Of course, there are many different combinations and types of medication, to suit the person concerned. It all depends on the degree/type of comorbidty experience

For those who have Autism but can’t get a diagnosis what do you suggest they do?
Contact the National Autistic Society. Contact your local GP. Contact a lead professional in your local primary care trust (the GP should be able to give guidance on this). If not, look up health centres locally online for phone numbers. Contact teachers or perhaps, special needs coordinators (SENCO; where possible and where appropriate). But there should be a SENCO in most schools.

And for those who have Autism but don’t know who to contact for support what do you suggest?
Try to find out if there are any local support services by asking your GP, school teachers, people in church groups, or through the consultant who is responsible for your care. Always contact the National Autistic Society and other related charities. Contact social services too, find a contact number which is responsible for your local area. This could be done simply by looking online or calling directory services. Sometimes, being involved in research studies can help an individual feel supported and listened to. People who conduct ASD research have usually been in the field for a long time and therefore, show a great level of understanding when it comes to your experience of autism. In addition, sometimes researchers can put you in the direction of suitable services but this cannot always be guaranteed.

Matthew – Thanks for doing this interview for Flavour Magazine.

Deirdre Howley – Research Assistant of Kings College London.

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