Autism Case Notes

The following notes were made in 2002 about out Autistic son M, which I am putting online in case in can help anyone else. It provides a snapshot of what it can be like living with a severely autistic child.

Case Notes

The Issue Stated:
• As M gets larger and stronger, his outbursts of “challenging behaviour” are becoming more difficult to deal with in the home situation.

• In particular, early mornings and evenings present the greatest problems.

• Both ourselves and others see this is a situation which is likely to get worse, not better, as he gets older.

• We feel as if we are running out of options and matters are getting beyond our ability to cope.

Behavioural Approaches
• While a certain amount of information can be gained from looking at antecedent effects, it is not always clear what external triggers cause M’s outbursts. We feel that the approach so far has, in a sense, not followed formal guidelines, because we are not experts in functional behavioural assessments. Our reading of the literature suggests that a more formal and expert approach would be useful in directing observations to what might be significant.

• In a recent review (Fall 2001) in the Journal of Applied Behavioural Analysis, “Functional Assessment and Program Development for Problem Behaviour: A Practical Handbook”(1997) by O’Neill et al, comes out as the best in the field, and presents “the logic, forms and examples that will allow the reader to (a) conduct a functional assessment in a typical school, work or community settings, and (b) develop a behavioural support plan that addresses problem behaviour”. It is a comprehensive approach, addressing structured or unstructured interviews, rating scales, checklists , scatter plots linked to ABC (antecedent-behaviour consequence) forms.

• If a behavioural approach is to be any kind of success, we must have all parties using this kind of rigorous approach.

Medical factors
• The weakness of the behavioural approach is that it assumes that the behaviour is caused by external triggers, and not internal states, either mental or medical, which may effect M.

• It is very difficult to understand why M reacts. But medical factors must be ruled out. In this, we would suggest problems like [a] tinnitus (hearing problems are a genetic factor on T’s family) [b] eye problems (blurred vision (needing glasses) causing headaches and stress, partial detached retina caused by repeated head-banging) [c] brain problems. [d] diet, not gluten free as such, but seeing if any additives or lack of water acts as trigger.

Medication
• The main problem is one of compliance. If there is no compliance, it is impossible to give him medication.

• Medication with side-effects must be ruled as a last resort.

• Medication requiring blood tests will obviously cause its own problems as to feasibility.

• With regards to measuring efficacy, we must return to the requirements of the behavioural approach. Note that medication can seem to be effective, simply because of a cycle in the pattern of behaviour (which may last months).

• Injected sedatives may be considered as an emergency measure and have been used in similar cases in the UK.

Effect on Siblings and Parents
• There would seem to be a definite effect on the siblings, particularly R, of fear, because of the continual outbursts of violence. So far, we have managed to protect the other children, but if M can inflict damage on us, he might well inflict it on them. If they are causing a noise, and in close proximity, he will “go for them”. In our opinion, there is a risk.

• We might note that one person seeing the bruising on A was concerned that T was beating her, and mentioned this to M’s school teacher. The bruising was so marked that she had not considered that a 12 year old could have done it.

• It might be helpful to interview the children to see how they present this to an outsider, as in cases of battered wives etc.

Emergency Cover
• Phase 1: short term help currently involves contacting the Emergency Social Services officer at Police number. Response is limited, normally to talking to us, and seeing if help is needed. M’s outbursts do seem to eventually burn themselves out, but may take some time, and may require some intervention depending upon locality.

• Phase 2: serious consequences. Provision if actual injury requiring treatment of M, parent or sibling has been raised but no plan of action set out.

Summer Holidays
• Mondays and Fridays. This is a worry.

Residential and Educational Options
• At present, as not an adult, still open to education and residency. The options may be narrower when he is an adult.