Autism and Life - John Simpson - Lighthouse Healthcare

The Three Key Terms PREDICTABILITY MOTIVATION UNEVEN COGNITIVE PROFILE

First Signs Felt humiliated when the teacher disciplined theclass. Felt that if a teacher asked me a question to which Ididn’t know the answer they were “picking” on me. Struggling to work in rooms with fire alarms Hating any disruption in the class.

UNEVEN COGNITIVE PROFILE“...he’s a clever boy, hemust know how to do it...”“...of course he can, he’s justdoing it to wind me up...”NEVER assume that anautistic person is too ablefor a task.BUT don’t assume that ANYindividual can’t either. The concept of osmosisis important – try anddifferentiate betweenacademic ability andlife abilility

Secondary SchoolI attended a different secondary school to most of my peersfrom primary school.I knew which classmates I liked and who was going to hit me– preferable to not knowing how people were going to act.I had one very bad incident with a peer.Different teachers had different teaching styles anddifferent atmospheres existed in different classrooms.School rules were confusingAnxietyLack of PREDICTABILITY

SPECIAL INTERESTS These are not obsessions – to an autistic individual theyare the most wonderful and important things in theworld. Football, Politics, Radio, Public Transport. They are on our minds MOST of the time – they are notsimply hobbies. They provide PREDICTABILITY They are also the best and often the only means ofMOTIVATION for an autistic individual. The greatest fear of any individual is to have theirspecial interest taken away – that’s why people thinkit’s an obsession!

The Breakdown Coming up to exam time. The PREDICTABILITY of school was going and thiswas frightening. There were too many choices. My UNEVEN COGNITIVE PROFILE was not takeninto account – others were helped make choices, Iwas not. Teachers assumed I knew how to revise – actually Ineeded more help than most.

Breakdown Day The Bank Holiday family trip to Blackpool was when Ibecame seriously ill. For years afterwards I blamed my condition on this oneday and refused to accept there had been a run-up. I began to believe I was in “The Truman Show.” In the months that followed I said and did some of themost hurtful things any son can say and do to theirparents – I needed PREDICTABILITY.

Hospitalisation After much duress for me and my family I was admittedto a residential psychiatric unit. I slowly began to recover – but in an autistic way. Again struggled to socialise with members of my peergroup in informal setting but would then totallydominate group sessions because they were structured. Still didn’t understand “alpha males” and thoughtanorexic girls were “stupid.” Whilst on this unit I was assessed for ASD Upon discharge was informed about ASD

The first day of disaster After my first day I was so scared by theexperience of seeing anorexia and self harm firsthand I vowed never to return. I was told if I did notreturn quickly my bed would be offered to someoneelse. My parents told me they could no longer look afterme and the unit was the only option. By removingchoice and creating PREDICTABILITY they made theadjustment easier

I’m not a freak This was my reaction to being told I had an ASD. I did not understand how the condition I had alwaysconsidered a sign of stupidity could possibly haveanything to do with me. I was given no real indication of what to do to helpmyself – imagine being told you have cancer andthen being expected to find out aboutchemotherapy yourself.

Talking therapies and me Some of the initiatives employed to treat me weretalking therapies I was encouraged to identify thethoughts I was having that no-one else was. Thiscreates one of two problems, depending on theindividual. Either: The individual is not able to understand thatothers think differently to him. Or: They realise others think differently but believethey are wrong.

Empathy This is probably the quality I would least associatewith an ASD individual. Trying to create empathy insomeone with an ASD is extremely difficult. I foundmuch greater solace in statistical answers and shortterm rewards than in empathy.

Assessment for ASD“We’re theworst parentsin the world” I don’t remember directly beingassessed for ASD.“Should weeven have hadkids”Everythingwe’ve donehas beenwrong” My parents do.

Discharge One of the things that most surprised my parentswas how quickly I was discharged. I didn’t think Iwas better and I don’t think they did either. On the day of discharge I was informed about myASD.

Light at the end of the tunnel Tried unsuccessfully to do A Levels, then to work ina supermarket Lived and died by special interest Met Sue and Bernie and started giving talks

Giving talks I found the process of preparing for thispresentation very therapeutic BUT despite how wellI present now I could not do this without support. The presentation went well and made me feelgood... something I was keen to repeat. The more I present the better I get but I will alwaysneed support – just like a few months ago.

Reality bites My parents tried to encourage me to find work, butin truth it was only when I got my season ticket forMan Utd that my attitude really changed.

Preparation for Work Experience Taster day to meetstaff and residents Informal chat with helpfrom employmentsupporter to explaintruthfully andrealistically what Iwould and would notbe able to offer Enjoyed work in part,but found some partsdifficult, particularlythe challengingbehaviour of serviceusers and communitybased activities.

The autistic burden of proof To prove to an ASD individual that:Either: Something good is going to happenOr: Something bad is not going to happenBoth the nature and quantity of the proof must bemuch higher THE HANDBAG INCIDENT THE FOOTBALL MATCH

Mental Health Remember, the Mental Health of any autistic individualis often very difficult to maintain and what may seemlike small changes to you can have a big effect on theautistic individual. Much of my success has come partlybecause I am able to recognise when such difficultiesmay be occurring, but much more so because I have afantastic support network of parents, friends andcolleagues who are able to spot the small changes,both good and bad, often before the individual is ableto.

Conclusion Hopefully what I’ve said today will help you in yourwork. I know from firsthand experience how frustratingwe can be, but I also know that from the success I’veachieved and the achievements of those I work withand those further afield how rewarding our work canbe.

THE ENDAny Questions?