Hoffmann Foundation for Autism
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Caring for 11 year old with Autism

Parents of children with Autism- what do you think are the necessary skills/qualities etc for someone to look after your child?

I have been interested in Autism for a while. I study Psychology at University and this year decided to quit my retail job and start working at a local school (between semesters) for children and young people (ages 4-19) who are autistic. Recently I took on some more work: working with an autistic boy who is 11. Working at the school has taught me a lot, yes, but I found myself not knowing whether what I was doing was good/bad/improvable. After asking for it, I received (pretty vague) feedback telling me that I was doing well. Now, working with an individual on a 1 to 1 or 2 to 1 basis, I've found myself in a similar position. I don't know what his parents expect of me/us and the only guidance we were given was 'don't give him too many sugary things to eat'.

We take him out for 3-4 hours at a time. Usually parks and nature reserves, where it is not crowded and we can avoid situations involving other children and other parents (who are often not very understanding of autism). The carer who looked after him before us also gave us very little guidance.

Whilst working I find myself thinking:

- Do his parents expect us to help guide him with social skills and interaction? Or are we just looking after him for their ease so they can get on with working etc? His parents occasionally say 'so where are you taking him today' and have *never* given us any suggestions of where to take him.

- Are his parents looking to us for guidance on how to handle his behaviour? Or do we learn from them? Who is learning from who? They seem as though they don't have a lot of understanding of autism and often struggle themselves.

- When working with him at his home, do his parents mind us telling him what to do?

- Do they have some kind of 'protocol' in handling him when he becomes upset? Obviously initiative is key- don't let him get into a situation where he or someone else can be hurt.

- How do we deal with people who are often not very understanding of his behaviour? He lacks spatial awareness and often walks straight through people to get to whatever he is interested in and often bumps into people on the way. We were shopping and he bumped into a woman and she told us to F off even after apologising. Could anyone advise us on this?

I understand that these are questions that only the parents can answer- but they are not particularly easy to talk to and are always very busy with other things. So, bearing these things in mind - what do you look for in someone who is caring for your son or daughter - could you describe the ideal person?

Many thanks, and sorry for the long post!

1 Reply

I think all the questions you are asking are the same questions most parents have in their own minds. Most parents of autistic children receive no training and very little guidance so basically just learn as they go. I wasn't sure from what you wrote if you are caring for this boy as part of your school work, if so, then I think the teachers should be the people giving you the most guidance. If you are working in the holidays for the parents then it would be good to ask them what it is they want.

Sadly the experience you had with the rude woman is something most parents have to face from time to time and walking away is probably the best solution.

Its really very difficult to give you any specific advise as every autistic person is different with very different needs. Maybe try and help him with social skill etc and at the end of the day either speak to the parents and give them a brief summary of what you have done or write down a few notes about the day and give them to read later. My son's school use to do this in an excercise book and I could write replies back if I wanted. This way if they want you to act differently they could let you know.

I think it is good that you are studying autism, the more people who work in this field the better so I hope you continue and like most parents you will find that the over time you gradually become more experienced. Good Luck.


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