Autism Has a Face

Autism is often explained in grandiose and superfluous words. It is impossible to grasp the scope of this condition, which is essentially a developmental disorder, until you have lived with or worked with autistic people over a considerable period of time. Indeed, it is said (and it certainly is true) that, ‘the taste of the pudding is in its eating’. The scope of autism is broad and it is truly a spectrum. It is referred to as a spectrum because it is a collection of; an assortment of; or if you like a variety of emotions and behaviours that allude to one and the same condition. In my work experience with autism, for over the past 12 years, I have found that autistics are in many ways different from each other.Their range of intellectual ability can extend from severe learning disabilities to normal or even superior levels of intellectual language and thought processes. Metaphorically, autism is an African warrior’s ceremonial cap bedecked with a variety of feathers; each feather is embedded in its own slot on the cap and signifies a feat in battle. As you would recall from my memoir in the past, I told you about Adam with his fixation on mustard. Sometimes, this rigidity is to a routine. The individual thrives only under set ways of doing things and resists changes. Schedules and clear plans of known activities benefit him. Deviatingfromasequenceatthelastminuteorlastminutecancellations evokeanxiety, frustrationsandchallengingbehaviour. Constancy, order, regularity help the autistic child to cope with his fears and anxieties, misgivings,complexitiesandambiguitiesoflife.Indeed,islifenotcomplex andpeopleinconsistent?Overtheyears,Ihaveseentolerancetochange rangingfromzerotominimal.Ihavewatchedhoweverastheacceptance of change improve significantly with person centred programmes that have been professionally drawn by relevant therapies, and effectively implementedbyallpersonsinvolvedinthelifeoftheindividual. Thisweek, I’d like to unveil the nature of autism a bit more with Kofi’s expression of autism. Kofi (fictitious name) was a young adult with autism. I was professionally involved here in the UK with his wellbeing, on a regular basis for three years. His particularly distinguishing personality was an intense self-absorption and a disinterest in people. He consistently displayedalackofinterestincommunicatingwithothersandindeveloping relationshipsofwhateverform.Althoughhewasnon-verbal,heappeared to understand functional Makaton and key spoken words, symbols, pictures - in his scope of experience, functional signs and routines. At the start of our involvement with him, his mum sadly commented that he had never displayed any connection or recognition of her as his mother. Kofi hardly made eye contacts or allowed touch. He was fully ambulant and doubly continent. Nevertheless, rooting his anus and smearing faeces about, plus self-injurious behaviour were what we had to contend with, in those first transitional weeks of college. Just like many autistics, Kofi was a picky eater showing a great sensitivity to taste and many times not noticing hunger. He tolerated only bland dry foods eating only un-stewed pasta, rice, vegetables and cereals. Soups, fruits and moistened foods were out of it! Kofi took snippets of water only, from his own cup only. We topped this up vigilantly and placed it within his field of vision always - to keep him hydrated. Kofi also displayed an altered sensitivity to pain. He seemed oblivious to pain and cold. In winter, he insisted on going out in just a t-shirt and thin trousers. It was a long and arduous challenge for us to get Kofi dressing upafractionwarmerbytheendofhissecondyearincollege.Wepursued this need for change because we considered Kofi’s choice here to be an uninformed one that had potential damaging health consequences. Kofi’s space was very precious to him; he wanted it white and sparse. He permitted no curtains or blinds on his window; no wall hangings or pictures,justhisbedwiththebuiltinwardrobeasfurniture.Hehadcome into residential college with his own television from home - this was wall mounted and screwed onto the wall. This stayed permanently in the station of his choice and was volumned down to his specification. All of these latter personal preferences were respected by us. Kofi had no road orientation but loved to be outdoors. He verbalised sounds of delightandmadegratifiedfacialexpressionswheneverhewasoutdoors. He seemed to be oblivious of people and animals but displayed a keen fascination with cats. Sometimes we heard him, while on a night shift, mimicking ‘meows’ (cat sounds).This is a form of Echolalia, which is also quite common in autistics. Kofi was another success story at the end of his three years in Further Education. With the aid of pictographs, Objects of Reference, PECS and other living-skills programmes, Kofi blossomed into a less anxious and reclusive young man.We have heard that he is doing very well in his currentplacement. Pre-schoolteachers,theirassistantsandmanagers at home need to be vigilant indeed.They must observe and record the behaviours of the children in their care daily. Parents must insist on receivingdescriptiveinformationaboutthebehavioursoftheirbabiesand toddlers on a daily basis and make comments. Being currently involved in pre-assessment interviews, as a member of the onsite therapies in a FurtherEducationCollegehereintheUK,Ifrequentlyhearmothers(and dads) mention autistic symptoms as being present in the young adults presented,rightfromtheirchildhood.Theearliestsignsofautisminvolve the absence of normal behaviour in the different stages of childhood. Symptoms of autism may be misinterpreted as signs of a ‘good baby’, a quiet-nature, independence, and an undemanding infant. There are some behaviours that a child should be exhibiting by three months, six months, nine months, 12 months, 18 months and by 24 months. How well do you know your child? It’s not too late to take more interest in your bundle of joy and in what goes on at his/her crèche..