DLA and Aspergers Syndrome

16 Sep

It’s been a difficult couple of weeks. I’m tired and moody, everything and anything seems to set me off!

There has been so much on my mind, an overload of worry that I can’t seem to shift. It’s not like I’ve had any less sleep than I usually would! Plus there has been no real big dramas (well, nothing out the ordinary that is)!

However, there is one thing I guess I can blame for my sudden decrease in mood…. The filling out of the DLA (Disability Living Allowance) form. Seriously it’s enough to make the happiest and most energetic of a person, feel depressed and lethargic! It’s a headache… A big fat headache.

I was first faced with this form back in 2008 when my son started attending CAMHS. I wasn’t sure it was right to claim it, but our doctor stated we should as Little Man was more than entitled to the benefit so why leave it to those that wasn’t! I actually cant imagine how we would now manage without it, it makes up a big part of our income.

I remember the thud when the postman shoved it through the letterbox… It hit the floor and the house shook. The form is just outrageously lengthy and anybody else who has ever needed to fill it out will know what I’m talking about! It’s just so barbaric when you have to answer the same question over and over and over again!

We were lucky as we didn’t need to appeal anything, there was no wrong decisions! Our claim went through the system accordingly and it was one battle we didn’t need to fight.

Just like in 2008 I’ve been faced with the stress of having to fill it out again! And how it hasn’t changed much at all.


Little man’s claim is up for renewal and filling out the form is something I’ve tried putting off for months. Not only do you get that classic wrist ache and dead fingers, but it’s very likely that you’ll slowly be driven insane. The frustration as you read out a question only to see that it’s the same as the one you answered 2 questions ago, only its been rephrased and categorised under a different area of care! Some of them questions you’ll need to read over and over again, just to understand it within your own head, because surly they don’t think that your child’s difficulties are that black and white! As a result you find yourself needing to use the space set out at the end of each section. You know the one… “Use this space if you wish to explain why you have given the answers you have within this section… Blah… Blah… Blah!” When your child is on the autism spectrum you find yourself filling out every single one of those boxes. Then there’s the space at the end of the form designated for “Anything else you think we should know?” plus you end up writing an extra two A4 sheets of paper with all that stuff you think they should know! Stuff you think will help your child’s claim success.

There is no possible way you can complete such a form in a day, not if you have a life anyway. You’re this child’s carer and the time required to fill in such a form just isn’t logical. This time round we have the official diagnosis. We’ve been through the statementing process and have seen a whole host of specialist. This therefore means we have acquired a good deal of paperwork, paperwork that the DLA would like you to send in with your form.

I hate paperwork and find myself requesting everything in digital form. I was then stressing at the prospect of having to print it all out to send it to them. Not only would this be disastrous for a good number of trees but would also cost me a small fortune to send. Thankfully they have allowed me to send it to them via email which makes the process much more simplistic.

The hours spent filling in the DLA form were not jolly, they highlight just how difficult life can be for your child which in itself is a difficult reality for any parent to face.

If your filling out the DLA form for the first time, I’d advise that you don’t rush into it. There are many online sites designed to help with the process and you might want to contact the national autistic society for some advice. Their online site has lots of useful information that is designed to help you fill out the form or appeal against a DLA decision.

6 Responses to “DLA and Aspergers Syndrome”

  1. Jill Wyse September 19, 2012 at 8:58 am #

    My son is now 14, I started to fill in one of these forms about 5 years ago…got about a 3rd of the way through then just had to stop! Then it got put to the side for completing another day! I never did finish it! Found it very hard and upsetting to fill in! Luckily we have managed to find the money for extras for Morgan such as one to one swimming lessons! But the help would have come in handy… Probably too late to do it now!!?

  2. Lilinha Angel September 17, 2012 at 8:53 pm #

    Luckily I never had to fill in such forms, but we had some troubles with working tax credit. After filling in all the forms, we were still not entitled to get it! So frustrating, so I kind of understand what you went through! But don’t give up! 🙂 xx

  3. mandy neal September 17, 2012 at 11:47 am #

    v just had to renew dylans dla claire and i must admitt i find the new forms a heck of a lot easier. plus you get the help book with the forms now. i had a letter the other day telling me his new claim was successful at the same rates he was getting so i was very happy. no more stress until next time when its due to renew. good luck with yours.

  4. tayana2pense September 16, 2012 at 7:53 pm #

    This is exactly the same here. You’ll be surprise to learn that we didn’t fill our, because it was absolutely impossible for us. Not that the fact is, our son is a 24 years old brilliant Asperger, and it is not so sad. I just can’t imagine to discribe him 20 or 50 pages to let people know why he has special needs. I really tryed to fill the form, I didn’t manage to. Once I had a meeting with a social helper. She told me, it was ok, everything I told her, I just have to write it down on the form. It is not so simple, I just can’t do it. :((

  5. Yvonne Frost September 16, 2012 at 4:10 pm #

    I totally sympathise with you. You have described the system exactly. I sat on my forms for months as I dreaded them and when I came to complete them it took me 15 hours and I have a law degree so what it must be like for a parent who struggles with form filling I hate to think!

  6. Belinda Lombard September 16, 2012 at 1:51 pm #

    I agree, they are the most dreadful forms to fill in and take ages. I have had to fill in quite a few over the years and nothing depresses me more. It is hard to describe how it makes you feel really, because you are having to pick through your childs life with a fine tooth comb. It is tricky for us parents as it is without having to put every little detail on paper. I had to help an adult the other day do one, and that was really hard for him to tell me the real difficult details as they were very personal and it was somewhat embarrassing to him and me. it would be good if there was an easier system.

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