autism and claiming dla??

[dippyd123]

Hi, after some opinions please. My 7 year old has recently been diagnosed after 2 years of endless tests and assesments etc. During the assesment stages I was advised by 2 doctors to apply for dla - I didnt bother wanted to get the official outcome.. So last week at an appointment the pediatrition asked me if I had applied as nobody had been in touch with her about writing a report for them. When I said no she seemed so shocked that I wasnt bothering and said not only is it financially beneficial it also looks better officially in regards to housing etc. I went away saying I will get a form but the more I think about it the more I am thinking why do I need to, course money is great but im doing ok atm and its not like I struggle with him with mobility etc of course we have good and bad days but its mainly his temper and hes a little behind for age group and the fact hes in a world of his own thats the problem, I dont see why me claiming a bit of money could make our lives any easier, especially when I have family who have been too poorly to work but been refused any help it kind of makes me feel a bit annoyed tbh.

Already feeling a bit emotional and in denial about the diagnosis I have only told an handful of people about the diagnosis, I just feel so bad that my beautiful clever healthy little boy is going to have this label attatched to him I feel like I dont want to use him for financial gain. I have been put intouch with a support group and hoping to book a day off work so I can go slong and just chat to people see if I can try and feel a little more positive.

Sorry for rambling on but thanks for reading x

May be worth getting this moved to SN children board, or ask for it to be moved.

It's entirely your choice if you apply. I get it for DS mainly for his asthma but he autistic traits (we don't have a diagnosis yet) came into the award. What you need to do is think about a bad day and as much as you normally try not to think about how he compares to a typically developing peer. If he needs extra help and support then it is worth considering applying.

Think about what your son could use the money for in the future. If you don't need it now it could be used for a course or an interest when he is older.

Ok I didn't apply for ds's dla until about 6 months after he had been diagnosed. I was so drained after the initial process that I couldn't face it.

Anyway I would absolutely suggest you apply, you can keep it in savings for you ds for when there is something he needs or just for his general future. We use ds's to pay for things like 1:1 swimming lessons, 1:1 horse riding lessons and speech therapy or for anything that we feel is beneficial for him.

use the cerebra guide to help you fill out the form as it makes it much easier.

w3.cerebra.org.uk/research/guides-for-parents/dla-guide/

oh and here

It's tough after you get a diagnosis you think it's going to suddenly be a load off your mind or all the questions will be answered but I found it a real anti climax. Be kind to yourself

We get DLA for DS1, who is autistic. You're entitled to claim it and probably Carers Allowance too. We also get a lot of support from the 'Aspire' programme, DS is entitled to 80 hours a year one to one support, but we supplement this a bit, it means he can do more in the holidays and I get more time with DC 2 and 3.
I remember feeling utterly worn out by the process of getting a diagnosis, then an SEN statement. It felt like such an intrusion... All the form-filling and specialists' visits. But 4 years on, DS is doing fantastically in mainstream school, with two amazing TA's who have been incredible. It was really upsetting to have to take on board the label, and get our heads around his condition and how we could cope, and help. Ultimately though, it has meant we can access useful help and support. And begin to understand

There's no obligation to claim for DLA if you don't want/need to, and you shouldn't feel pressured into claiming. We've been getting it for DS1 who has autism and it was invaluable in the early years when we had to buy in therapy and additional assessments to prove he needed a statement. These days we don't need the money as much as he gets most of his support through school, and I put a lot of it away for him in savings/pension. It's hard to know if he'll cope with employment in future and I don't want him just having the minimum of benefits to survive on.

DLA triggers quite a lot of additional support, including carer's allowance and additional tax credits, and it meant that we could maintain a reasonable quality of life even though I couldn't work due to his disability. It was also a threshold for meeting other support like family fund grants (which paid for things like a trampoline, laptop, Xbox) and short breaks (which paid for days out and activities like gaming conventions to nurture his interests). And it has meant that we've not been affected by any benefit changes so far, because DLA means we're exempt from the benefits cap and carer's allowance means I'm not required to be jobseeking even under universal credit. So even though DLA itself seems like a small amount, it means we're recognised as a family with disability needs, and opens up another level of support which made a real difference to our family.

Thanks for replying. Sorry if wrong board to post on not upto scratch on the site yet.

Thanks i do see what you are saying. But what if i saved for my son or used for activities problem i would have is i have 3 other children.

Something else i have worries about is my son keeps asking if hes poorly how did you ladies explain

no he isnt poorly - get some leaflets from national autistic society and explain to him what autism means . "autism is why you find it difficult to......" if he can speak and ask questions then maybe he is high functioning? ? there are books you can read with him. call NAS www.autism.org.uk/news-and-events/about-the-nas/contact-us.aspx

You probably don't realise that you are already doing more for your DS than you would for another child of the same age without his issues. It may not cost you directly financially but it does impact your life - no doubt you have to plan routines carefully, avoid doing some things, do other things differently. If you claim DLA now then put it aside for later on - what will you do when he is older and primary age childcare will not be able to take him during school holidays for example, but he is not able to be left at home without adult supervision for even short periods of time? Does he have particular clothes sensitivities and will only wear certain things that cost you more than you would otherwise have had to spend? Have a hard think about not doing this, though there is no obligation to go ahead and do so if you don't want to.

In a very similar position here. Dd has been diagnosed for four weeks and it is a lot to take in. I haven't applied for DLA yet either and I also have three other children.

However I think I will apply eventually because life is just that bit harder for her. We don't get any other benefits and I won't claim carers allowance but Dd will need extra support as an adult.

It's probably worth getting a form and thinking about the questions. Dn is similar and initially upon diagnosis we couldn't think of what his needs might be compared to another 6yo that money might alleviate at all, but there's a lot that slowly became clear - more expensive after-school care because he has meltdowns at the cheap crowded one, eats his sleeves so needs new clothes more often, much more difficult for SIL to work even from home as he can't be left in a room and when he's at ours, can't leave him in a room with my dc if an adult isn't there. So many skills he could get 1:1 but not from a group.