Psychol dissertation on how parents cope with autistic child

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Hi,

im conducting my degree dissertation on parents experiences of dealing with autistic children. i will be interviewing my aunty whos son is 5 years old and autistic. i would go to my aunty for advice but it may affect what she says in the interview so i will have to ask on here

i believe that parents of autistic children dont get the support they need.. be it emotional, psychological or funding

what sort of issues do parents of autistic children face?
are you aware of all the techniques you can use to improve your childs development and do you understand why these techniques are in place?
what other things can i mention/ask my aunty to support my argument in my findings that parents need to be considered just as much in the whole process of diagnosing your child with autism, coping with an autistic child and being made aware of what is to come as the autistic child grows?

thanks very much!

One of my big issues is the lack of support for older children on the spectrum in school. My dd was diagnosed in middle school. I did all kind of research and have found great ways to support her at school, but I don't find that the teachers do very much to help or understand her. She gets almost no support. She has a lot of cognitive deficits and I would like to have more input into the learning goals they establish for her. I also wish they would try to work on her strengths and not get hung up on her weaknesses. For instance, I told them she has trouble with synthesis and the big picture, so they put that down as an objective. In fact, it would be better to teach her work-arounds, the way I do at home, get her to talk it through, list all the little elements, etc. There have been one or two genius things that have helped her, but I feel I am on my own being her real teacher. I don't mind this, but I worry about her getting discouraged when there isn't support in the classroom. BTW, the psych report said she should have a teacher's aide and I was told there was no funding for that, and it was unlikely she would ever have it. It has turned out to be ok, because she probably wouldn't like being singled out, and I have done the same work with her at home. I just feel that some of my suggestions and the psychologist's were dismissed too quickly. One comment I would like to make is that sometimes parents understand far more about their child than the experts. And we love them.

I'm pretty new to the game - my twins with autism aren't even 2.5 yet. With my limited experience, I will tell you about the issues we have faced so far.

1. We got our diagnosis, and then...... nothing. Then what? We are using EI but we had no idea what to ask for or to expect. The first services we got were 2 hours a week with an audiologist. Not exactly what we needed, and we figured it out, but WHY should we have to figure it out? It would have been great to have support to ask what we should do next, or at least get to know our options. WE figured it out and we are very lucky to have found the right school & therapists/therapies, but we really went in blind.

2. Insurance/finance. We are a a middle class family, our insurance is provided the company my husband works for and they are self insured. That means they don't have to obey state mandates. Even though his company has chosen to pay for ABA, we still get denied every.single.time we submit a claim. One month it's because ABA is "experimental", the next it's because they don't have every therapists license on file (when they DO), they lose claims every month, claim we never sent them (we do keep names, dates etc to prove them wrong). So right now we are out over $16,000. Our sons school costs over $7000 a month, for only 3 hours a day. Eventually we will no longer be a middle class family. We will have to use our retirement money and refinance our house to pay for adequate schooling for our children.
3. Psychological: After the DX I was broken. I was given the name of a social worker who never called back. I eventually found a school for my kids , and htey have a weekly group therapy session. I also found a local support group. I found them. There was no one that helped, I googled it.

I sound like a whiny a**hole here. I don't mean to. I just wish, for the next family that comes along, things would be easier. No idea how to make that happen though.

I hope this doesn't sound overly critical but your questions are all over the map. Are you asking if I get the emotional, psychological or financial support I need or are you asking if my autistic son gets the support he needs? Those are 2 totally different questions. What kind of issues do we as parents of autistic kids face? That is a LOADED question. Do you mean at home with our kids, or at school dealing with administrators and teachers, out in public dealing with ignorance and unaccommodating people and places, insurance companies, doctors, therapists, etc?

And techniques for development? That varies greatly depending upon the degree of functioning each child has.

You state that your argument is that parents need to be considered just as much in the whole process of diagnosing, coping and being aware of what is to come. This is a very non-scientific opinion but in my experience, diagnosis of many higher functioning autistic kids would never happen if it weren't for parents pushing educators and medical professionals for diagnoses so parents are often highly involved in the diagnostic process. In addition, a large part of a diagnosis is based upon written and verbal questionnaires for parents to complete so parents' opinions and observations are typically considered to a great degree. I guess I'm just not sure what your argument really is.

I think the general idea of what you are doing sounds good but if you are doing this for a dissertation, I think you are going to need to focus your line of questioning more. Do families with autistic kids need more support from social services, schools, medical professionals, etc.? I think the simple answer to that is yes, we do. There are many complexities though.

huh....I posted to this, but don't see my response...there was no reason it would have been moderated because it was pretty simple. I have some things to do, but will try to come back and recreate what I wrote.

hi, i know my questions are all over the place.. im just starting to get a few ideas together and starting to think of questions i could ask in my interview. im largely unaware of how having an autistic child would/could affect you so if you could explain your experiences it would give me a thirst for ideas i could ask

the interview will be an hour long so i want to know kinds of things like..
how are YOU coping with having an autistic child.. what emotional problems/benefits do YOU face
do YOU feel that your life has been impacted greatly due to having an autistic child..how
does supporting an autistic child put strains on YOUR finances because you have to fund support groups etc.. or do you get the financial support you need off the government or various charities

my hypothesis is biased because in my dissertation i wont actually have to state a hypothesis.. i will be trying to ask non biased questions that focus on all aspects of having an autistic child and i am *hoping* that the interview gives off the general impression that more could be done to support parents/ primary caregivers... then this would be my rational and i would suggest in my conclusion certain interventions that could be put in place to improve the support.

i DO want to know if families with autistic kids need more support from 'social services, schools, medical professionals' and even their own place of work.. does having autstic children impact your career (such as needing time off to attend medical examinations or observations etc) and how supportive is your workplace in this?

thanks. i hope i make more sense

I accidentally voted for the wrong one, I meant to choose "not happy" ... there is no need for there to be "yes" and "no" before the choices - that's why I goofed.