ASD – understanding Autism

Autism, We have all heard of it. We all think we know what it is, but do we really?

As outsiders, most of the time we can watch someone in the way they talk, walk, act or behave and label them as Autistic. We consider ourselves able to detect it because we have seen “rain man” or “mercury rising” for example.  

I want to acknowledge that there’s so much more to Autism than meets the eye. Autism affects every individual in a different way. Depending on the individuals own personality and other factors involved like other disabilities, allergies, behaviours, medications, and environments.

You may not realise just how life restricting Autism can be to some people and how others manage perfectly well with it, this is because there is a term called Autistic Spectrum Disorders, meaning there are varying levels of Autism.

The Autistic spectrum hosts a range of conditions listed as pervasive developmental disorders , these include AutismAsperger syndrome, pervasive developmental disorder, childhood disintegrative disorder, and Rett syndrome. These disorders are typically characterized by social deficits, communication difficulties, stereotyped or repetitive behaviours and interests, and in some cases, cognitive delays.

Autism is characterized by delays or abnormal functioning before the age of three years in one or more of the following domains: social interaction, communication and restricted, repetitive, and stereotyped patterns of behaviour, interests, and activities.

Asperger syndrome can be distinguished from autism by the lack of delay or deviance in early language development.Additionally, individuals with Asperger syndrome do not have significant cognitive delays. Other symptoms include repetitive routines or rituals, peculiarities in speech and language, inappropriate affect or social behaviour, problems with non-verbal communication, and clumsy or uncoordinated motor movements.

As you can tell there is more to knowing about Autism than meets the eye. And i’m sure those that have suffered with it or cared for someone with ASD will agree that it is a most complex and detailed disability.

While a specific cause or specific causes of autism spectrum disorders has yet to be found, many risk factors have been identified in research that may contribute to the development of an ASD. These risk factors include genetics, prenatal factors, neuroanatomical abnormalities, and environmental factors. Probably the most damaging claim regarding autism is the “vaccine controversy” It has been suggested that autism results from brain damage caused by the measles, mumps and rubella (MMR) vaccine. Although there are still no scientific results to prove this theory yet, I know some families who will insist their children were developing perfectly normally before the vaccine and went downhill afterwards- loosing the ability to maintain eye contact and loosing speech.

As if Autism spectrum disorders weren’t hard enough to cope with, they also tend to be highly linked with other disorders, the most common medical condition occurring in individuals with autism spectrum disorders is epilepsy, which occurs in 11-39% of individuals with ASD.  Learning disabilities are also highly linked with individuals with an ASD. Approximately 25-75% of individuals with an ASD also have some degree of learning disability.

The main treatment is to lessen associated deficits and family distress, and to increase quality of life and functional independence to the individual. No single treatment is best and treatment is typically tailored to the individuals needs. Intensive, sustained special education programs and behaviour therapy early in life can help children acquire self-care, social skills, and job skills. Available approaches include applied behaviour analysis (ABA), structured teachingspeech and language therapysocial skills therapy, and occupational therapy.

Controversies have surrounded various claims regarding autism spectrum disorders. In the 1950s, the “refrigerator mother theory” emerged as an explanation for autism. The hypothesis was based on the idea that autistic behaviours stem from the emotional frigidity, lack of warmth, and cold, distant, rejecting demeanour of a child’s mother.Naturally, parents of children with an autism spectrum disorder suffered from blame, guilt, and self-doubt, especially as the theory was embraced by the medical establishment and went largely unchallenged into the mid-1960s. While the “refrigerator mother theory” has been rejected in the research literature, its effects have lingered into the 21st century. I’ve had the experience of working with a lot of individuals and families of individuals who have ASD. I am no scientist however firstly I would like to state that how can ASD behaviours stem from the way in which a mother nurses and raises her children? Firstly any mother who has a child with ASD will tell you how hard it is and how guilty you feel without the judgement from the rest of the world, and secondly, if this was the reason why have some parents had 3 or 4 children, raised them all equally and yet only one is diagnosed with a type of ASD?

One in 88 American children is diagnosed with autism-spectrum disorder, according to the Disease Control and Prevention centre, so don’t you think we all should know a little more about it?

Naughty, challenging, dis-respectful, anti-social – these are the terms most commonly issued to people who suffer from ASD. But why? Because most people still don’t assume that individuals with ASD should be out of the house attempting to live a normal life whilst being forgiven or overlooked for their mistakes in behaviour, social skills or language.

We are still such an ignorant race assuming that everyone we come across will always be fully in control of their feelings, behaviours and languages etc. but the truth is quite opposite.

To someone with autism simple tasks like going to a café to eat, can become most challenging. They have not only to focus on the task in hand but put up with distress factors as well – for example bright industrial lighting, noise, smells, colours, patterns or layouts of an area and other sensory factors.

I taught one girl who had Autism when she was between the ages of 3-6, and for her, sensory overload was one of the things that upset her the most, at times when she was affected she had no control over how she reacted to this distress. Methods of coping for her included screaming in a really high pitch, covering her ears and rocking, biting or attacking the person closest to her or running away. She as many suffered with an inability to express herself verbally, so these behaviours were the only way she could let others know that something was wrong.

When this happened in public it used to frustrate me and also upset me at the same time that other people could be so ignorant. I used to have to listen to comments like “we are trying to enjoy a quiet lunch here, do you think you could stop her ruining it for us”, or “for god sake if you can’t control a child why can’t you leave it at home”!!! …….IT, how could someone refer to another human being, and a child as an IT! And why should she have to miss out on the experience of learning and adjusting to this world just because it may have taken her longer than others. The conclusion I came to, is that the not knowing about ASD behaviours and the ignorance others have towards people with ASD, mean that those individuals are the ones distressed by the experience, they are the ones getting upset or angry about people with ASD expressing themselves, and it’s because they make an assumption about an individual without a second thought.

Is it really a wonder therefore why people with ASD who are able to express themselves, don’t do it for fear of embarrassment or being labelled as “stupid”, “weird”, “naughty” or “uneducated” for example?

We live in a society today which has most confused me while I was working with people with ASD. The people I thought would be most supportive of these individuals were the elderly, being able to recognise that if people are less able they should have help, and the once to show the most ignorance or play the “bully” for example would be the kids, but I found it to be quite the opposite. Generally the elderly were the ones showing discomfort and an unwillingness to accept difference in others believing still that individuals with differences should be kept at home out of the public eye where they can be an embarrassment to themselves or others, while the children and teenagers showed a willing to assist where they could, interest in the individuals and seemed generally understanding.

 Before I finish, as I could discuss the ins and outs of autistic behaviours all day as it’s so in-depth and fascinating, let me just take the time to congratulate everyone who lives with autism on a daily basis, this includes the individuals themselves as they are the ones who suffer either emotionally, physically or mentally every day, but also the mothers, fathers, siblings who have to compete for attention from birth, learn to accept their brothers or sisters, become full time carers as well, and the care staff. Because what you do every day is full on, upsetting, frustrating and tiring. No one unless in the same situation could ever know or understand how strong you have to be every day.

Let me leave youwith this ever so insightful video about a girl and her families journey through Autism…………… enjoy!!


Having an awareness of LD

Having an awareness of LD

Please lets all be aware that not all children who miss-behave at school or at home are “naughty” lets open our eyes to the fact that they may have a Learning Disability. Lets help recognise that while the individuals are young and need our help, support and knowledge. Lets not have a generation growing up being labled as “different” “weird” or “naughty”. Lets activly support. 

The addiction that is called caring.

Most people don’t consider care work difficult or even really a profession, it’s simply thought of as something that people who fail school do because it’s easy to access….
Let me present you with the truth.

Having worked in care since the age of 16, I have covered many aspects of it, nursery, child care, children with special needs including behavioural, dietary and emotional needs and adult health and social care involving caring for the physically and mentally disabled as well as the elderly. Yes I finished school without many qualifications however the studying I have done within my work places have been full on and intense!

3 NVQs levels 2,3 and 4 as well as yearly mandatory training. Let me tell you some of these mandatory ones – you may have never considered this training necessary:

First aid, Fire safety, Epilepsy, Autism, Downs Syndrome, Mental Health, Manual Handling (objects and people), Hoist, Personal Care, Challenging Behaviour, Administering Medication and Record Keeping.

I was recently touched by a kind and amazing gesture by one of my former service users who has downs syndrome. But I’ll come back to that later.

When people think health care, straight away they think of hospitals and wiping people’s bottoms. But it’s so much more. Yes there are aspects of it that are not pleasant but when you really love what you do it doesn’t seem that bad – trust me!
I always think that anyone who has the ability to work within the care system is an amazing person and I’m including myself in that as for once, I’m confident that it’s something I love and can do so well with never ending passion!

The best feeling for me is just to improve the lives of others who have been dealt a bad card. I don’t feel sorry for them at all as one may think we should- quite the opposite, I am actually proud of them and respect the way they continue with their lives and often achieve more than us.

For example I’ve had a lady with learning difficulties play table tennis for England, a man with downs want to become a carer himself to help the world, several who are so independent they refuse to believe they have any problems at all, one who taught me the really meaning of bravery and who I have now the up most respect for after surviving a life of all forms of abuse from her family, and the list goes on.
The most endearing thing is their ability to make us care givers feel vulnerable, and without even realising it they teach us about respect, ambition, patience, kindness and our own strengths.

It’s not the same as a desk job or one where you are not working for or on behalf of others. It’s emotional, upsetting, tiring, stressful, hard going and sometimes seemingly impossible.
But beyond all that it’s worth it every day!

I used to love being a support worker- being with my service users every day, assisting them with anything that they may need help with in order to maintain a “normal” life (whatever normal is) this could include anything from:

Personal care, Laundry, House duties, Cooking, Medication, Correspondence, Shopping, Social interactions like outings, Group support meetings, Exercise  Emotional Support, School or college, Family mediation, Meetings with Social services or other professionals, Finances and medical appointments.

It gave me a real sense of satisfaction that just by spending an hour, 3 hours or a whole day with that person I have made a difference to their lives.

Anyone who has worked or works in care knows that every day isn’t brilliant, people unlearn what we have taught them, they regress, they move on or pass away or they can be extremely rude and or violent.
But on days like this it’s so important to stop for a second and just put yourself in their position, why do they scream and shout? Why do they hit out or ignore us? Why do they refuse our help?
Imagine having your whole life and routine planned out by someone else? Imagine loosing your independence, Imagine having your pride and dignity exposed everyday and shared with the world. The fear for most service users is that they will be abused somehow (financially, emotionally, sexually or physically) as so many in the past have been. Every time they meet a new carer they are exposed to this fear. Therefore they react as you or I would if a strange person came to your house demanding to bath you for example.
This is the reason we as carers strive to put the client needs first, let them tell us what they want or need, who they wish to work with etc.  we need to remember that they should always be the ones in control and that we are there to make them happy.

When I was promoted to management and based in an office, at first I felt betrayed. I thought I had been doing my job to the best of my abilities so wondered why I was being taken away from it. I was worried for who would care for my clients instead, as I had great relationships with them I didn’t want them to feel I was letting them down.
But surprisingly I was able to make a bigger impact than before, mainly by passing on my wisdom of care work and the individual clients needs to other amazing staff.
The reason I’m writing this is because I want everyone, in care work or not, to know and appreciate what we do but also why we do it. It’s not something everyone could do and I believe it takes a special person.

I was inspired to write this for several reasons-

1) realising how much I miss my work now that I’m living abroad, And

2) My mum came to visit me last week, and with her she bought a present. When I had been back in Chelmsford at work last June a service user who I had cared for for 3 years told me how happy she was that I was pregnant and what a lovely mum I would be, that was enough of a thank you for me, but she has since then worked on making my son a knitted teddy bear which she has thought about so much that it has actually reached me in Bogotá  Colombia and touched my heart more than she will ever know. How grateful am I that with all the issues and struggles she deals with on a daily basis she was still finding time to do this for me!?

There is a real reason why we do this job and it’s not the paperwork, the moaning relatives, the pressure from social services or the thrill of improving the business, its because we care, and the people we care for can show us just how much they appreciate us everyday in return.
Sometimes it’s just a small thank you, sometimes it’s a smile but for me my thank you came in the form of a bear!
I actually have tears writing this now (maybe its because I miss home and the people I love – including work clients and colleagues) but I think more so because I feel so touched that the people we care for day in day out remember us for who we are and what we do for them even long after we have seen them.

We as care workers touch people’s hearts everyday and that’s all the inspiration we need to carry on doing what we do.
So when times are difficult remember the simple things and let it put a smile on your face, because everyday you are giving someone hope, love, care, and inspiration too!