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Autism benefits and care needs - Carers UK Forum

Autism benefits and care needs

For issues specific to autism / Asperger Syndrome.

I'm writing this with some help from my friend and unofficial carer. I hope it makes sense. Neither me or my friend are good with computers.

II was diagnosed a month ago at 39 years old with aspergers. I think this might have been autism if my parents had told me before assessment thatI didn't speak until I was 4 years old...but it is what it is.

I left school when I was 14 and have had one job that lasted a year and another that lasted nearly a year. I was getting DLA high rate care until I had to apply for PIP last december. I was turned down because the dwp said I failed to attend assessment number 2. BUT assessment number 2 wasn't on the date they claim it was. Assessment number 2 was on a different date and cancelled for me. If they made a 3rd assessment appointment nobody knew about it. I've appealed their decision not to award me PIP and await a court date. I think the Judge told the DWP that assessing me wasn't appropriate but they keep writing to me asking me to attend assessments. They have also decided to reassess my ESA. I've had ESA for about 12 years and before that incapacity benefit. I think they are trying to kill me. They have been told by my now ex GP that I self harm and they are partly to blame.

I find the thought of an assessment for either benefit stressful. Especially when they are 2 hours from my house or when they want me to take a train 60 miles. I can't go that far even with someone to help me. When I'm alone I get lost in areas I should be familiar with. I don't look at road signs and can't read maps. I got even managed to get lost in the local citizens advice office.

I have now asked the council for a care needs assessment. My friend was helping me with a lot of stuff at home. But I was paying him whenever he took time off work. My friend can no longer take time off work and doesn't want a carers roll anyway.

I can be aggressive and I think he gets depressed when I shout at him. Without support I'm in big trouble though. I don't eat much even when reminded. I have a limited tolerance of food and spit food out because I think I'm going to choke unless its mashed. I weigh less 8.5 stone because my diet is poor. I can't cook either. I use a microwave. BUT it broke a week ago and I can't afford to replace it. Social services told me to ring them or go to doctors to get food bank vouchers if I didn't have food/microwave when I get my ESA payment on Thursday. Thursday is a long time to go without. I have borrowed the little bit of money my friends got, but its not a lot. And even if it keeps me fed til thursday I'm not sure what to do. I don't think a food bank will take into consideration the fact I only eat a few sorts of food.

If anyone knows how long it should take before social services to do a care needs assessment please let me know. Also please let me know how long it can takes before a PIP appeal is heard in court.

I'm not eating drinking changing clothes. I'm isolated. I have one friend that is now working a lot of hours. And my pyhsical health is very poor at the moment. I had to change doctors surgery earlier this month because they wouldn't help me with anything. I have been going to pee 30 times a day. I have had a white painful patch on my cheek for over a month. And because I tried to ride a motorbike in 2015 and crashed it...I suffered a MASSIVE hematoma on my knee. I now walk with a limp. And have bad back every second of every day. It clicks and grinds loudly but not one doctor looked at it. Not one doctor will send me for scans on it. They all say its all normal and not to worry. I don't think the doctors at the new surgery will be any better. 10 minutes isn't enough to explain all these issues. Even my friend gets ignored when he tries to talk for me.
Hello Autistic1000
The time assessments and tribunals take varies greatly from area to area, so no one here will be able to answer those questions.
I do suggest you contact the helpline at autism UK, who are the largest UK charity supporting people on the autistic spectrum.
They should be able to help and provide support to you
http://www.autism.org.uk/get-involved/a ... ct-us.aspx

They also have a section in benefits
http://www.autism.org.uk/about/benefits ... efits.aspx
but I do think you should call them too.

Good luck
Hi Autistic1000,
It sounds like you and your friend have a lot to deal with.

Next time you have a PIP assessment request they assess you at home. You can also request this for ESA.