Celebrating Autism

Following BBC4’s documentary Autism:Challenging behavior on 5th November 2013, I felt compelled to get blogging about Autism. I have intended to write this post for a long time and have many ideas for research and writing on the subject, since there is such controversy surrounding the possible causes of the disorder – to which the answer remains unknown – and equally the divided opinions on the best and most suitable treatments and therapies for the condition.

As the mother of a 3 year old child on the Spectrum (my son George was diagnosed with an Autistic Spectrum Disorder in July of this year, at 2 and a half years old) I wholeheartedly relate to the parents followed in the documentary, especially Cherian’s heartache at not hearing your child call you ‘mamma’  http://www.bbc.co.uk/programmes/p01kw2fn . I noticed signs in George from as young as 18 months old and although I knew something wasn’t quite right, I never guessed it could be Autism – for the pure fact that it was something I knew nothing about. It had been suggested to me by certain family members in the health profession, and even his nursery threw in suggestive clues about his ‘sensory’ preferences and his repetitive lying down of toy figures and trains (George was happy if everything was laid down or placed on its side).

It wasn’t until I began researching Autism for myself, that it suddenly dawned on me. These are the people I had before now been scared of. Snippets of information I had gathered from stereotypical high school banter was all that made up my impression. Odd behaviors and unpredictable outbursts of violence was sadly all that forefronted my mind.

Such a negative and small minded view. So much has changed.

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The diagnosis of Autism was not one taken lightly. I went though the motions as I’m sure all parents do. Shock, grief, the quest to finding answers – and then rather quickly, acceptance. I read book after book after article after research paper. I don’t think there’s a question I couldn’t attempt to answer on Autism. But the best teacher of all, is George. He is kind, funny, loving, handsome, sweet, cheeky, stubborn and quirky. And I didn’t need a book to tell me that.

Watching this documentary drew my attention yet again to the difficult question of education for every parent of an ASD child. Will they survive in mainstream? Is Special education a better approach? More to the point, will they be granted a place in a Special school? The statementing process is unnecessarily long and painful. What I would like to see in the future of education mirrors how I feel about the approaches to therapy in this documentary.

There is a line that I want to blur. I want to integrate Autism into society. For this to become successful society needs to understand Autism. I want to increase the teaching of Social studies in schools, so that disability and difference is something that is accepted and understood, not to believe – naively like I did -that there is anything to be scared of. It was my lack of education. There is an imbalance in the education of Religious studies to that of current issues within society in regards to disability and equality. PSHE is taught at teachers discretion rather than to guidelines within a specific framework;

http://www.education.gov.uk/schools/teachingandlearning/curriculum/b00223087/pshe whereas in comparison, Religious studies are compulsary up until the age of 18 and practiced daily within maintained schools.

http://www.education.gov.uk/schools/teachingandlearning/curriculum

I have been fortunate enough to have experienced working in both mainstream and Special schools. There are are also certain schools which are trying to incorporate the two by attaching SEN units, enabling pupils to combine mainstream schooling with extra support and space to suit their individual and sometimes complex needs. I want to see more of these schools.

I want to see the teaching strategies used in specialised education implemented within mainstream schools, so that not only the adult to child ratio is increased, but also the quality of teaching and resources used to make sure these children are achieving to the best of their abilities.

I firmly disagree with Gunnar Frederiksen’s idea, that Autism is a condition which can be cured. This opinion can mislead parents desperate for help who cannot afford to fund such intense therapy. I believe therapy at this level comes at the cost of the child’s individual characteristics and personality. Will parents not be happy until their son/daughter becomes their perfect paradigm? Where do they stop? I am happy with the child I was blessed with and have no intention of turning him into an obedient pet. On the other hand, the teachers at Treetops were taking a firm but less intrusive approach which also resulted in success with one child’s eating habits.

The bottom line is that we need to address a problem that society has been ignoring way too long. Lets not treat those with Special Needs as ‘the other’, but take them under our wings and help them to be the best they can. With increased awareness and understanding, parents would be less likely to take drastic measures in order to ‘cure’ their child of their differences, and instead relax about their differences. Start celebrating Autism with widespread education in schools.

These are my hopes for the future.

http://www.autismdailynewscast.com/bbc-four-autism-challenging-behaviour-documentary-and-opinions/4540/joworgan/

10 thoughts on “Celebrating Autism

  1. paul November 20, 2013 / 6:46 pm

    Good article (or should I say blog)Lucy. I see a passion in your writing and wish you all the luck in the world.

    • lucylawton November 24, 2013 / 1:29 pm

      Thank you Paul! There’s more to come 🙂

  2. Tracy November 20, 2013 / 9:35 pm

    Loved it. A really thought provoking piece of writing. More importantly I can see that that this is written from the heart of a roman who is experiencing autism first hand. I hope that you and George receive the right help that you need and deserve.

    • lucylawton November 24, 2013 / 1:28 pm

      Thanks Tracy. He has been refused an assessment for a statement of Special Need but I am appealing it! They won’t get rid of me that easily 🙂 If you could share the link on your facebook page I’d really appreciate it, so I could reach more people x

  3. tracyjones1st@yahoo.co.uk November 20, 2013 / 9:37 pm

    Loved it. I have commented but just read it back and meant woman not roman, haha auto correct gone wrong xx

    Sent from my iPhone

  4. sandie bates November 21, 2013 / 7:11 pm

    Well written Lucy, this will certainly help so many parents and the media to fully understand Autism. Proud to be related to you; keep going

    • lucylawton November 24, 2013 / 1:25 pm

      Thank you Sandie. If you could share the link on your facebook page I could reach out to more people x

  5. calle December 14, 2013 / 12:05 pm

    My son is now 19. Your article is perceptive and, as you rightly point out, the child is your best teacher. What is sad and at the same time makes me smile, is how their insistence beats you
    down and makes your bend and adapt. As I was reading your article the tears welled up in my
    eyes, and I don’t even know why. These children are profoundly compelling, and provoke deep
    love and despair in considerable alternating measures I had to fight for a diagnosis, hving floundered around for years, and at a complete loss as to what was wrong. Just something.
    Something which prevented us from being a ‘normal’ family, who could make an arrangement
    to go to someone’s house or on a bus or on a holiday – but what it was eluded me. The diagnosis came aged nine. Then the r e a l battle began to get the statement and then the specialist school.
    This nearly broke me, mentally and physically as I had a full time and demanding teaching job and a daughter with an immune deficiency, who was constantly ill. I have now semi-emerged as a person in my own right, but even so, I wouldn’t change anything about my son, though I do feel sad for my daughter, who missed out, was and remains resentful.
    As a teacher there is one point you make, which intrigues me, since I have thought and lived by it for some time. When I teach, I instinctively break the content down to complete basics. Then I consider all the learning styles I have maybe observed in my son. I order things spacially, sequentially and colour code, and I use the idea of Venn diagrams to develop overlapping concepts or items of content. If you like categorising and anticipating in advance areas of uncertainty which will cause anxiety – just like planning a walk down the road with my son, avoiding all the bins, the chemist shops, spotting the dogs and hoodies, groups of children or men long before I felt his grip tighten on my hand and this frantic panic behaviour set in. Once the trigger of fear had been released there was no reasoning, end of. Same with learning I think. In this sense he has taught me valuable lessons and many ex students I meet tell me how much they felt they learnt. I’m not wishing to sound my own trumpet, just remarking what an education my son has been to me. of course he’s not become a perfect young man and of course we still live institutionalised within a huge number of restrictive behaviours, but it works for us, and life is not only bearable now, but quite funny, People on the autistic spectrum are often made fun of or thought of as idiots, but when you take the trouble to indulge yourself in their mind set, who’s to say that their view of how things are organised is not as valid as the mainstream perception?
    I find it frustrating and fascinating in equal measure, but am so lucky to have been given the chance to look into this different world because it has brought me to a better understanding of myself and taught me a greater respect and tolerance for others and another way to be.

    • lucylawton December 29, 2013 / 4:33 pm

      Hi Calle, thank you for your comment. I think you should blow your own trumpet, although my son is only three I can empathise with the difficulties you have faced and which I have still to come. The resentment of your daughter is something that stung me a little, as this is something I try my best with for my daughter who is four, to not feel, although I think it may be inevitable. I try to keep as positive as possible as I’m sure you do as well. I understand the spectrum is broad and not all children with autism, especially severe – will cope in mainstream schools. My concern is that the current level of awareness is too weak, the autism community needs a more effective outlet than our websites and blogs, although these are extremely useful and provide a great deal of information and support. Schools are accepting children with autism diagnosis, and children who are later diagnosed – they must be accounted for in the education system to provide equal opportunity. Even teachers in Specialised education are not all trained in autism. Special needs and learning difficulties, autism, disabilities – these issues are facts of life which should be of high importance within schools. It isn’t a choice to be born with a disability, like it is to decide what religion you or your family may follow. It isn’t a fabrication, it’s a fact. One that has been kept quiet in education for way too long.

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