MEDIUM AND LONG TERM IMPACTS OF AN ASD DIAGNOSIS

1. FINANCIAL

1.1. Cost of specific foods

1.2. Insurance claims for broken property

1.3. Particular clothes, bedding, smells etc - often have to be purchased over and above normal requirements. Money that it costs to return products that aren't meeting the need,or that can't be worn due to sensory needs etc

1.4. Cost of coping strategies for adults - sometimes these may be bad habit items or they may be relaxation type items - but the drive to have them in the experience of some is much higher than in other families - eg having a 'glass' on hand at the end of the night

1.5. Extra running around - eg especially if behaviour means that child only attends school for an hour or two a day but siblings are at school and so extra pick ups and drop offs

2. FAMILY LIFE

2.1. Dictated by the autism specific needs

2.2. 'Different' practices eg: can't all eat together

2.3. Often can't do things as a whole family

2.4. Safety concerns for siblings

2.5. Siblings often missing out or having to compensate

2.6. Birthday celebrations often disrupted by behaviours of the child with autism

2.7. Anger, resentment, frustration of siblings towards the person with autism

2.8. Difficulties having friends or cousins over for siblings - the child with autism can make it a very stressful experience

3. FRIENDSHIPS

3.1. Limited

3.2. Very special - the friends you have are true friends - like diamonds!

3.3. Difficulty / inability to socialise with friends

3.4. Phone calls/visits/other forms of contact dictated around behaviours and feelings of being able to cope - some days just too tired to put friendships ahead of personal needs

4. AGENCIES

4.1. Referrals made to Oranga Tamariki by those who 'don't get it'

4.2. Police involvement needed for extreme behaviour

4.3. Support from Multi agencies - often positive, often negative experiences

5. SPIRITUAL/RELIGIOUS

5.1. Difficulty in practicing religion due to child's behaviours and sensory needs

5.2. Guilt and frustration at not being able to attend or fully participate in mass or celebrations

6. MARRIAGE

6.1. Arguments

6.2. No marital time

6.3. Constant demands on partners

6.4. Can strengthen relationships - working as a united front for a common goal

6.5. Differences in perspectives regarding behaviours, strategies etc

7. HEALTH

7.1. Constant Stress

7.2. Inability to get a break

7.3. Depression and Anxiety

8. HOLIDAY SEASONS

8.1. Often surprises are the worst so Christmas and Birthday gifts need to be obtained with the child - no surprises as this might lead to a meltdown

8.2. Changes in routines can be really unsettling

8.3. School routines forgotten and having to be learnt each time there is a holiday break.

9. HOUSE RENOVATIONS

9.1. Sensory needs of the person with autism need to be taken into account

9.2. Lighting changes, curtain changes, planned and unplanned renovations etc can all cause disruption to routines and sensory profiles - change can be a good thing but it can be very problematic

10. FOOD

10.1. Restricted diets and tolerance to smells, textures and tastes can affect what can be prepared, cooked and served in your household

11. EDUCATIONAL

11.1. Difficulty sourcing support

11.2. Lack of understanding of autism

11.3. Stress on siblings who are also in the same educational context

12. PETS

12.1. Need to be protected from meltdowns

12.2. Can become scared of noises/behaviours

12.3. Still need care even when parents are tired and wornout

13. SELF TIME

13.1. The need to be 'available' often interrupts personal alone time (such as toileting, showering, reading a book)

14. THINKING

14.1. Having to always be forward thinking focused - the what if scenarios - making sure preventative, reactive and coping strategies are sorted; planning ahead for social stories, managing anxiety, planning for a range of scenarios; always having to be contactable