DLA claim first-timer/ Aspergers

Savvy_Sue

gingerbread45 wrote: »

some of the time perhaps..but all the time 6 hours a day at school 5 days per week?? For the more mildly affected children with autism (and by this I mean children who are able to function within a mainstream school) you sometimes find they try to hide their disability to fit in but fail miserably....not succeed so well that absolutely nobody at school knows there is a problem.

It's not so much that nobody at school knows there is a problem, just that if a child doesn't grab sufficient attention they may not register what the problem is.

I'll accept that DS1 is a mild case, who could 'pass for normal' (whatever that is), but he did have different behaviours for different situations. Just one small example: out of school he refused to wear any tops with buttons or t-shirts, but when I said "This is what you wear at your new school" and gave him shirt and tie, he accepted it. If I'd tried to make him look smart for a family 'do', I'd have got nowhere.

gingerbread45

SingleSue wrote: »

Same here karmacookie


Oh, and no simple questionaires filled in by parents only.

The forms are not filled in by parents and I dont recall saying that so am sorry if that is how it read , it is done by the medical professional such as paediatrician or pyschologist and the parents are asked questions about their child. The paediatrician then gives each answer a score and at the end of the questionaire test adds up the score for a total.

SingleSue

A form did play a small part in the diganosis of my boys (although I refused to give them information for the form in my middle sons case, as above) but that is all, the rest of the decision came from watching them at sessions, reports from schools, mencaps, nursery and the paediatrician.

The CAMHS had been seeing my middle son from the age of 2, so for over 3 years before his diagnosis..so they had a wealth of their own reports to rely on too.

Youngest son was initially picked up as having an autistic like problem when we were on one of these sessions for middle son when he was around 16 months and they then made the further referrals for him. He was eventually diagnosed at 5, nearly 6 years of age with a wealth of reports and sessions to go by and the only reason it took so long was because they didn't know if he had tourettes, ADD, Aspergers, PDD, global delay or what....eventually though, they discovered he had a bit of everything alongside the triad of impairments and the way they interacted with each other made him very complex and hence the complex autism tag. As he has got older, his autism has become more pronounced and 'in your face' as his specialist outreach teacher said.

rainbow81

Hi Skellet

Good luck with the DLA application. Have you since sent the report that details your daughter's diagnosis? If memory serves me correctly you can send further evidence before they make a decision.
Did you send reports/IEPs etc from her old school?
I sent the latest Speech Therapy/Physio/IEPs etc with the form, and also got my son's teacher at the time to write the extra work she put in at school to get him to do what the other children were doing naturally. It is all about proving that your child requires more support than others of the same age.

No offence, Gingerbread, but some of what you are saying really can't be generalised to every child with ASD. Some "APPEAR" to behave appropriately at school. Just because they are not having extreme meltdowns at school doesn't mean they are accessing their education the way they should be. They could simply withdraw, then the teachers assume they are shy and no problem. They could daydream all day and not take anything in. They could take everything in word for word and reproduce it but nor understand a word of it. You see what I mean. If you are suggesting it is easy to get an ASD diagnosis (or, I assume any) then I'm afraid you are mistaken. It takes years and many many appointments and heartache in the main. It is never a case of just doing a questionairre.

Anyway, back to the point... and I can only speak from experience regarding the DLA ... if you are not successful I would definitely recommend the CAB and also the cerebra website. They highlighted ways in which I had adjusted our lives for my son and I didn't even realise.

And in defence of her new school, although they really should take your concrns seriously (as I hope any school would do) it may be that the set up suits her better. There may be more structure, for example. Anyway, give it a little time and maybe contact Parent Partnership to make sure you are not being taken for a ride. It won't hurt.

Good luck x

rainbow81

gingerbread45 wrote: »

Although its not stated in the DSM-IV for autism diagnosis it was always made clear to us, and to most of the friends we have who have children with autism that the social interation difficulties, issues with imagination and flexibility of thought and communication difficulties must be present in all situations and aspects of life for a diagnosis. For instance if the child with autism has issues with communication then its very unlikely that the child will turn up for school and suddenly not have communication issues. If the difficulties were not present in all situations then it would lead towards a possibly different diagnosis.

Sorry to bring this up here but could you tell me who exactly has made it clear to you and most of your friends who have children with Autism that all impairments must be present everywhere? Each individual is different and although you are correct that a person doesn't lose their ASD in different situations, it certainly can present in different ways.

My son had the ADOS test and the Paediatrician wasn't sure about his diagnosis until she saw him at school. When he had a nice adult playing with him he was amenable, smiley and had good eye contact. That doesn't mean he doesn't have Autistic Spectrum Disorder. At school he cannot function without support. When she observed him at school he didn't even acknowledge her presence, and he'd spent a whole hour playing with her the week before. I won't go into all the problems but it's suffice to say that he is different in different situations. Some days worse than others as well of course. People at the high-functioning end will have a lot of strategies in place to appear as neurotypical as possible, especially as they get into their teens. It can be utterly exhausting and so they let off steam where they are safe, as I believe some other posters have said.

I will get off my soapbox now .

dealchaser

starnight wrote: »

dealchaser - my DS psychologist visited his school and it was one of the best things to happen, the teacher couldn't believe all the things she was told, but CAMHS really helped them understand and he now has an IEP and the teacher is more understanding. I hope the meeting goes well for you and your son.

Thank you. I hope it makes a difference for him as he finds school a real struggle.

dealchaser

gingerbread45 wrote: »

Although its not stated in the DSM-IV for autism diagnosis it was always made clear to us, and to most of the friends we have who have children with autism that the social interation difficulties, issues with imagination and flexibility of thought and communication difficulties must be present in all situations and aspects of life for a diagnosis. For instance if the child with autism has issues with communication then its very unlikely that the child will turn up for school and suddenly not have communication issues. If the difficulties were not present in all situations then it would lead towards a possibly different diagnosis.

It also seems to commonplace now for children to be diagnosed by a parental questionaire that takes about 45 minutes in the paediatricians office, Questionaires such as the 3di or ADI-r in which parents are asked questions about their child without the child even being there as opposed to thorough autism testing such as ADOS-G, CARS or GARS. I think the former allows for a much larger misdiagnosis criteria because the child has not really been observed in all situations by a team of professionals, the paediatrician is basically just going on what mum and dad say. It seems really odd to me that school would not see the same issues considering they would almost certainly normally be involved with the diagnosis. As I said earlier in the thread this could pose a huge problem for somebody trying to claim DLA. If the parents are seeing issues, then these issues will need to be backed up by school because DLA will contact the school to clarify if the child is over 5 years old.

All the professionals I have spoken to have confirmed that this is quite normal behaviour for aspergers sufferers. Although the scholl can see he has problems with social activities and communication they do not see the outbursts and violence.

My son has been awarded HRC and LRM on his diognosis. The school were not contacted at all about his award (I have asked them). As I have said before I enclosed his full diognosis and outlined his daily behvaiour wth the application. His claim was accepted within 3 weeks. They even called me to clarify a few points before telling me I would receive a letter confirming the details of his award.

Maybeanotherday

dealchaser wrote: »

All the professionals I have spoken to have confirmed that this is quite normal behaviour for aspergers sufferers. Although the scholl can see he has problems with social activities and communication they do not see the outbursts and violence.

My son has been awarded HRC and LRM on his diognosis. The school were not contacted at all about his award (I have asked them). As I have said before I enclosed his full diognosis and outlined his daily behvaiour wth the application. His claim was accepted within 3 weeks. They even called me to clarify a few points before telling me I would receive a letter confirming the details of his award.

The letter I got back said to expect a response within 8 weeks which makes it the 18th December, we'll have to see I didnt feel confident filling the forms out to be honest, but did get a statement so to speak from her childminder and also contact details for various agencies they can contact

dealchaser

skellett wrote: »

Thankyou I appreciate it, problem is though people think your mad and you can't cope with simple behaviour untill they see it don't they!!!

.

Most people I know seem to have "simple" solutions as to how to deal with him but until you live with a child with this condition you will never truely understand what it is like. The worst part is his lack of affection for us. I amsure he does love us but we have been told by the professionals that we will never get the same child to parent love that most people get. Life is about them andtheir needs. Your needs are irrelevant to them.

dealchaser

munchings-n-crunchings wrote: »

Once you have submitted your forms, and signed your consent, it's out of your hands who the DWP choose to contact.

I made the mistake of including my daughters primary school, even though they were the ones to first pick up on her differences leading to her diagnosis, but anything to do with 'benefit' and I was treated like the lowest of the low, and just after making money.

I have developed my own assumption, that schools do not like to put anything on paper regarding your child, that you can then go and use as ammunition towards getting a Statement of Needs. Verbally they say things, just not on paper, and a rosey picture is painted.



The best suggestion, is to make your own approaches, from her former school, and child care providers. They have nothing to loose by giving a frank and honest opinion. All these can be submitted in support of your daughters claim.

For my daughter, we took the structure from school, and applied it to her home life.
I made a large poster size timetable, which covered from getting up, to school, hometime, free time, meals, weekends etc, and created blocks of time
I made little icons, which attached to the timetable with velcro, so my daughter felt in control of her time, and knew what was happening and when. Ok, it meant I lived by her timetable too, but, for the benefits it brought, it was worth it.


Regards

Munchie

Thank you. We have already been told that we have to have a much more rigid structure at home but my mind had not thought of having something similar to school. I think I will give it a try.