Research: An acceptable standard of living for families raising children with autism - participants needed

[ChloeBlackwell]

Hi, I am Chloe and I am a postgraduate researcher at Loughborough University. I am currently running a study which explores what an acceptable standard of living should look like for families raising children with autism.

Up to now, I have interviewed autistic young people and their parents/guardians to ask about daily family life. These conversations have been incredibly worthwhile, highlighting the important role played by services and wider society in the lives of autistic young people and their families. The interviews have also demonstrated the difficulties associated with autism, as well as the strengths of autistic young people and their parents/guardians.

What you are asked to do:

Now I am inviting parents/guardians of autistic children to take part in an online focus group to talk about which goods and services they and their children need. Volunteers will take part in one focus group, lasting up to 2* hours, between August and September 2020.

Volunteers will receive a high street voucher of 25 pounds.

To be eligible to take part, volunteers should be parents or guardians of a young person with autism who is aged 5-17. Volunteers should also be currently living with their child on a full-time basis and living in the UK.

For more information please visit: lboro.ac.uk/research/crsp/c...

I look forward to hearing about you and your family!

*The website may read that the focus groups will take up to 3 hours. This information will be updated to reflect the reduced time to 2 hours.

[SamCJ66]

My son is outside of the age group at 19. He has a mental age of about 5 and is quite happy to be at home (quite a bonus at the moment, lol) . I have to 'persuade' him to go anywhere and am a bit worried that it's going to be difficult to get him to go to some kind of day care now that he has left school (that he really didn't enjoy).

My problem is that I'm a lone parent and he will never live independently, what I really need is someone who I can trust and who can look after my son on a regular basis, at home (maybe take him out etc). Because at the moment I have no life at all; I can't go anywhere on my own and it's only going to get worse as we get older.

I should think you've be told this already, but just in case you haven't. Lots of luck with your research

Sam

[ChloeBlackwell Researcher in reply to SamCJ66]

Hi Sam,

Thanks so much for sharing your experience. I think your experiences resonate with so many parents and carers. Regular respite and care would change your situation drastically, wouldn't it.

I hope you've both been getting on alright during lockdown. I suppose if your lovely son likes being at home that has helped a lot, as you say!

Thanks for your kind words

[49Twister in reply to SamCJ66]

Hi Sam sounds like you need a good personal assistant (PA) who you can trust for your son. Do you get direct payments which would help you pay for one and some respite so you can do the things you enjoy. Have you got a social worker? If not get in touch with adult social care in your area and request one. Apologies if you already know this as I don't know your circumstances but it sounds like this is what you both need and someone should be helping you achieve it. As I've said everything takes forever to get in place so get the ball rolling now and hopefully this will happen for you both.

[ChloeBlackwell Researcher]

Just thought I would try and bump this post. This research desperately needs participants to take part in a 2-hour online focus group. Please forward the link to anyone you think may be interested in helping. Thanks!

[Apinke in reply to ChloeBlackwell]

Hi Chloe

My son is 6 and I would like to take part

[ChloeBlackwell Researcher in reply to Apinke]

Hi! That's fantastic. Would you like to PM me your email address? Or you can contact me at [e-mail]

Thanks!

[49Twister]

Hi Chloe, a lot of parents on here have adult (children). My son is 45 and over the years I have been involved in many groups trying to improve their lives. We were part of the pilot scheme for direct payments in Newcastle some years ago now. It’s very tiring, draining and time consuming for parents, but I understand how important it is as direct payments has improved greatly since then. It was very difficult in the beginning for us not knowing what you could spend the money on, but now it’s a great benefit to parents to buy respite and P.A’s etc for their children. You have to start somewhere but everything takes a lifetime. My son was born in the 70’s when there was absolutely no support whatsoever, so we have come a long way, but to the detriment of my health due to the stress of having to fight for everything. Like Sam previously I have been a lone parent just about all of my sons life and it takes its toll. It’s very important work that your doing so I hope you get enough people to help out and make a difference.

[ChloeBlackwell Researcher in reply to 49Twister]

Thanks for your reply and for sharing your experiences. Sounds like you were part of some really important work and I'm sure your efforts have contributed so much.

More importantly, I'm sure your son benefits tremendously from your efforts as a parent and advocate!

[ChloeBlackwell Researcher]

Hi all,

Hoping it's okay to bump this post as I am nearing the end of fieldwork but just have the space to include a few more people in this research.

I am now particularly looking for parents/carers of primary-school-age autistic children who attend a specialist school and/or use a a little or no verbal communication. The reason for this specific callout is to strike a balance between this scenario described and other scenarios already discussed with people.

Willing participants are asked to take part in an online focus group and will be reimbursed with a voucher for 25 pounds to thank them for time and contributions which are so appreciated. The groups have just been fantastic so far.

Thanks all.

Chloe