Accommodating Autism

In order for Josh to lead a fulfilling and dignified life with autism, it has been necessary for those supporting him to be resourceful, determined and persistent. One is reminded of Christopher Reeve's poignant quote  "a person who is severely challenged never knows his hidden sources of strength until he is treated like a normal human being and is encouraged to shape his own life."

 

The following areas have all required attention and planning:

 

Home Adaptations

 

* Reinforced ceilings- "This is because I sometimes jump very strongly. My body does this when I have pain and need the toilet"

* Black out curtains in bedroom- "This is to block out the light in  order to help me sleep better" 

* Safety door stop- this device prevents fingers being trapped

* Stair protection- "This is to keep me safe during meltdowns"

* Plastic viewing window in the door of bedroom but have curtain for privacy

* Special mattress

* Music System- "Sound wakes every part of the soul."  It is safer to place music equipment in a locked cupboard because "I have thrown music players downstairs because I need it to be tidy upstairs so that i can feel in control" (OCD, said to be attributable to the presence of certain gut bacteria).

* Monitor water intake- When Joshua has pain he tends to drink to excess as he feels this brings some relief. Once this led to a convulsion since which time we have taken great care to regulate fluid consumption. Hence, bath taps have been removed from their shafts and can be easily replaced as needed.

* Frequent baths under supervision-  "I like fast running water because it eases the pain in my tummy."

* Special shampoo and toothpaste- Fluoride, addiditive and preservative free (natural products).

* All harmful household products, e.g. detergents all medication and sharp implements are made inaccessible because Joshua has Pica, as well as an absence of any sense of danger.

* Second washing machine

* Secure house and garden- as well as ensuring that Josh is confined within a safe environment it is necessary to secure cupboards within the house. It is important that he does not have access to forbidden foods or dangerous substances/ objects. 

* Trampoline, foot spa, jacuzzi, running machine- to cater for his sensory needs

* Communication aids and charts available in all rooms (see communication page)

 

Diet

 

There are many diets advocated for autistic people. Because this diagnosis is a "catch - all" label it is a matter of trial and error to find the one which will benefit any given autistic person.

 

* Gluten free/ Casein free

* Salycilate free

* Phenol free

* Specific carbohydrate

* Lutein free

* Body ecology diet

 

Meal times

 

* Given a choice of food.

* Food prepared in advance- so Josh is not kept waiting. It has to be bone free and at the correct temperature. We check that the pieces are the appropriate chewing size.

* Forbidden food made in accessible

 

Bio medical intervention

 

We have come along way since the days when autism was believed to be an emotional disorder. It is now accepted that it is of multi - factorial aetiology, manifest by bio - chemical derangement. As such, there has been much success implementing bio - medical intervention. An abundance of literature exists on this subject (see bibliography). As far as Josh is concerned, this translates into seven times a day administration of various nutritional and bio - medical supplements. It incurs considerable research, time and expense to put this in place and requires ongoing review and adjustment (see diaries). It is essential that any change is undertaken gradually and individually so as not to confuse interpretation.

 

 

Hospital treatment

 

Unfortunately not all hospital personnel are prepared to look behind behaviours and see the person inside. As always, the interaction depends on the personality of the people concerned and not their training. It is vital that Joshua is always accompanied by someone who will act as his advocate not only to facilitate communication but to ensure he is treated like anybody else and that his dignity, rights and wishes are respected. He has had several inpatient stays and has needed 24hr support from family and friends. It has been very helpful that he has private health insurance so that waiting time is minimised and that he always receives medical treatment at a consultant level.

 

Certain neutrogenomic (genetic) mutations are common in autistic children (MTR / MTRR / MTHFR) and pose a problem with nitrous oxide anaesthesia. The anaesthetist should be made aware of this potential dificulty  and a safe alternative can be found. The patient should be given methylation support in the form of B12 supplementation prior to surgery. I refer to the work of Dr Amy Yasko - (www.ch3nutrigenomics.com). 

  

Whenever possible outpatient appointments are booked well in advance.  The first slot of a session will reduce any unnecessary delay. Josh visits the venue the day before and when possible is introduced to the nursing staff and his special situation is made known. He is given a full explanation and timetable of what to expect.

 

 

Outings

 

Before leaving, Joshua's back pack is checked to ensure it contains the following: medication, straws, change of clothing, food and drink, chewing gum, anti bacterial gel, the key for disabled toilet, mobile phone, communication aid, I - Pod and Tom Tom.

 

If the outing is to a theatre / concert, care is taken to book seats at the back of the auditorium, at the end of the row, or even better, in a box. It is important that a toilet is near by. If the venue is new a special trip is made so that Josh can familiarise himself with the setup. His car needs to be parked nearby and a disabled parking badge is very useful. Whenever possible the staff are introduced to Josh and his situation is explained. Some enlightened theatres employ a member of staff who deals specifically with the needs of individuals with special challenges.

 

 

Holidays

 

We are delighted that Josh has been facilitated to enjoy holidays in Wales, Blackpool, the Lake District, Isle of Mann and Northumberland. Some of these have been family holidays whilst others have been with friends. All have required tremendous planning.

 

The venue has to provide out of door activities in a safe and friendly environment both at the seaside and country, as well as things to do if the weather is inclement (eg museums and exhibitions etc.)

 

The accommodation needs to be made safe. All breakables must be put away. Household detergents need to be made inaccessible. Some food is taken ready to eat, some frozen and access to local kosher, gluten free products is a bonus. If we are staying in rented accommodation vigilance is necessary to ensure the property is not damaged. 

 

Josh travels with his PA's in his "Motability" car whilst the rest of the family travels separately. He needs his own space. 

 

 

Family celebrations

 

Including Josh in all family events is vitally important. If these include dining, provision is made for Josh and his PA's to have a private table in a convenient position so that he can come and go with ease. His dietary needs can then be accommodated without him having to face the irresistible  temptation of sitting with people who are eating food not included in his diet. His own special meals are planned with the caterer involved. If the event is a buffet / reception a plate of food (including something extra nice) is set up and awaits him. He is shown the venue in advance as described above.

  

"I think the important thing is to be included happily in the family. My sisters wedding felt amazing because of my  awareness of what was happening to me at all times, both from a sensory and social point of view. I was involved with the wedding the entire time. Ths was possible bcause I had my own table and because I was allowed unlimited free food. 

 

 

Contingency Plans

 

It is extremely important that contingency plans are in place in the event that the key organiser of Joshua's life be indisposed / unavailable. An Essential Lifestyle Plan is an invaluable tool and will layout protocols to cover every eventuality. It will need regular review and update. 

 

Aspirations

 

It is essential to frequently revue with Josh his goals not only for the future but also for each day. Essential lifestyle planning and Person Centred Planning are valuable tools but only if they do more then collect dust in a draw. They need to be implemented. Families need every support to enable them to make dreams come true.

 

"I still want to continue learning in Yeshiva even if it is for a short amount of time each day. I always want to be learning and I like the idea of the new set up of studying with friends in the evening. I am ready to start University but I am nervous. Things need to be discussed more."