DLA claim first-timer/ Aspergers

SingleSue

dealchaser wrote: »

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I had a meet with my son's Psychologist this week and she told me it is more common than not that a child with aspergers will behave well at school but bottle up all the bad things that happen and then when they get home explode. This is exactly what my son does. I can see the look of disbelief in his teacher's eyes when I explain to her what he is like at home. The Psychologist will be visiting the school soon and she tells me that one of the most common things they have to get across to the school is that although they do not see these behaviours it does not mean they do not happen.

They call my middle son a gentleman and the gentle giant at his school and look with disbelief when they read his previous school record where he was expelled from his primary school for extreme violence.

We always know when it has been a bad day for him at school or when there are extra pressures, he is an absolute nightmare at home with lots of aggression and violence (he had me over again on Friday morning badly bruising my thigh and back) but at school? Their normal gentle giant as he had let it all out on me!

Maybeanotherday

SingleSue wrote: »

They call my middle son a gentleman and the gentle giant at his school and look with disbelief when they read his previous school record where he was expelled from his primary school for extreme violence.

We always know when it has been a bad day for him at school or when there are extra pressures, he is an absolute nightmare at home with lots of aggression and violence (he had me over again on Friday morning badly bruising my thigh and back) but at school? Their normal gentle giant as he had let it all out on me!

Amazing isnt it! My daughter is on her second school and now her 7th chilcare provider as she drives everyone to distraction:rotfl:

gingerbread45

Savvy_Sue wrote: »

It's not so much that they switch it off as that they have different strategies / reactions in different places.

I once picked DS1 up with his best friend's younger sibling in tow: there was an assembly at the end of the day which we went to. When it was over we were told we could take our children with us straight away. DS1 saw me and little friend with me, and went wild with happiness and excitement, rushing round the hall like a steam train. Teacher watched in astonishment, as she had NEVER seen him make so much noise, go so fast, or behave other than in a completely 'controlled' way. She asked if he was always like that at home, and I said that while that was fairly extreme for him, he WAS usually very 'excitable' and quite loud after school. I suggested to her that he'd spent the whole day behaving appropriately for school, and that took quite a bit of effort, so he was likely to 'explode' at the end of the day.

No-one at that stage had suggested a diagnosis for my son, but I knew that he had different behaviours for different settings, and in very few places was he what I'd call 'normal'!

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.

gingerbread45

karmacookie wrote: »

I disagree with this. quite often the first sign that there are problems at school is when the child's behaviour disintegrates as soon as they get home to their place where they feel safe.

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. And certainly that is not going to look good on a DLA form when a parent is putting down their childs worst day scenario, and having to follow it up with the words "But once they get to school they are fine and have no signs of a lifelong bio-neurological disability?". If school are not having to give this child more care than another child the same age, and the childs disability is only displayed at home then you cant blame DLA for saying no to a claim. And if symptoms are only displayed at home then I would perhaps have to think that a child had been misdiagnosed as having autism when perhaps the problem is something else.

gingerbread45

skellett wrote: »

HOWEVER the new school are saying that the problems they are having are only minor AT PRESENT, prehaps this is as she has only been there since the start of this term or that this school manage her better...pass:p

What about her last school skellet? Could you turn to them to be contacted instead of the new school. if she has only been there for a short while the older school may know her better

karmacookie

I would just like to clarify that my DS was diagnosed by CAMHS and a local specialist who had an interest in AS disorders, we were referred there after we had seen the paediatrician. He was diagnosed at 4yrs old after reports from HV and reports from nursery (although nursery reports only stated a small fraction of the behaviours, nothing like the amount of problems we were having at home). I can assure you that diagnosis took a lot longer than a brief questionairre.

I did post some of the comments from parents night earlier in the thread, my point being that the comments were ovservations about my son that quite clearly tie in with his diagnosis but teachers are not always that clued up and do not always put 2 + 2 together.

As other posters have also observed it is a common occurence in AS children to bottle everything up until they get home. An ocurence that our CAMHS team agree with.

Good luck Skellett, i didn't intend any of this hostility, I only posted my comments to reassure that indeed children with AS can be much more difficult at home than at school.

gingerbread45

karmacookie wrote: »

I would just like to clarify that my DS was diagnosed by CAMHS and a local specialist who had an interest in AS disorders, we were referred there after we had seen the paediatrician. He was diagnosed at 4yrs old after reports from HV and reports from nursery (although nursery reports only stated a small fraction of the behaviours, nothing like the amount of problems we were having at home). I can assure you that diagnosis took a lot longer than a brief questionairre.

Just to clarify I was not referring to you Karmacookie , it was just a general comment about the way a lot of children are diagnosed now.

munchings-n-crunchings

gingerbread45 wrote: »

What about her last school skellet? Could you turn to them to be contacted instead of the new school. if she has only been there for a short while the older school may know her better

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

karmacookie

munchings-n-crunchings wrote: »

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

Yeah, been there. It does work. the reason a lot of these kids can keep it together at school is because of the timetable, it's predictable.

Visial clues are good, for a time we had signs all over the house, just stick pictures and a sort of stop sign, to discorage stuff like climbing etc.

When my son learned to tell the time it was a big breakthrough! i.e. 5.30 in the morning is too early to get up even if it is light!

The reason my son does so well now is because his early diagnosis gave him (and me) access to knowledge and support that helps.

Also getting a little help from DLA meant there was enough money around to help replace all the breakages and paid for DS to do extra social activities!

Good luck with your claim Skellett. It's probably a good idea to get a report from the previous school if pos. It would also be a good idea to get some advice from the council welfare benefit service.

SingleSue

karmacookie wrote: »

I would just like to clarify that my DS was diagnosed by CAMHS and a local specialist who had an interest in AS disorders, we were referred there after we had seen the paediatrician. He was diagnosed at 4yrs old after reports from HV and reports from nursery (although nursery reports only stated a small fraction of the behaviours, nothing like the amount of problems we were having at home). I can assure you that diagnosis took a lot longer than a brief questionairre.

I did post some of the comments from parents night earlier in the thread, my point being that the comments were ovservations about my son that quite clearly tie in with his diagnosis but teachers are not always that clued up and do not always put 2 + 2 together.

As other posters have also observed it is a common occurence in AS children to bottle everything up until they get home. An ocurence that our CAMHS team agree with.

Good luck Skellett, i didn't intend any of this hostility, I only posted my comments to reassure that indeed children with AS can be much more difficult at home than at school.

Same here karmacookie

Both my boys were too diagnosed by the local CAMHS after many years of being seen by various specialists. Middle son's initial diagnosis was ADHD which they then removed and said I was making it all up as I was too cheerful! After this, he started school, they had an absolute nightmare and pleaded with me to take him back to CAMHS, which I did, but I refused to answer any questions in case they accused me once more of making it up and instead they had to speak to the school, the staff at the mencap drop in, the staff at the local special needs nursery where he had attended since the age of 2 and his paediatrician for their information. Even this diagnostic phase took over 6 months and consisted of more than a simple questionaire.

Middle son still does have problems and still needs support at school as his short term memory is diabolical, he is completely naive, cannot understand fiction and has no sense of danger but the violence and aggression they have not seen as yet...all other schools have.

The school he is currently at have learnt the key to keeping him calm is to keep his brain busy, not to let him overheat and to have a very structured and ordered day, they were aided in this information by his statement, information from me after years of experience of it and the information from the pupil referral unit he spent 4 terms at after being permanently excluded from his primary school because of his behaviour.

It is because of the above that I believe his current high school have not seen the violence and aggression although they have commented at times on the feeling of underlying aggression in him.

All said, he still has aspergers and he still has difficulties but they have been lessened by the controls we have in place...remove those controls although they seem quite subtle and they would soon see the old behaviours once more.

Youngest son is a different kettle of fish altogether, again his diagnostic phase was very long because he didn't fit neatly into any box but as he got older, his difficulties became more pronounced. His initial diagnosis was autistic like behaviour, a label that made it impossible to access therapies designed for autistic children and therapies for 'normal' children. Mainstream speech therapy couldn't deal with him because of these tendencies and because he didn't have a formal diagnosis, he couldn't go to the specialist autism speech therapy...so I researched stuff myself from America and firstly got him to use a form of makaton and then finally got him talking (at age 5) in single words.

He was finally diagnosed shortly after (again, no short questionaire) with complex autism, the reason why it was so difficult to put him in a box as he has bits from all parts of the spectrum, using reports from everyone involved in his care, from his former playgroup to his paediatrician.

Youngest son has consistantly shown his autistic behaviours at school and didn't actually go to school full time until part way through year 6 (he is now year 8), even spending a couple of terms at a specialist autism school (unfortunately he couldn't stay as they discovered his IQ was very high...he is a maths savant). He has high level support in a mainstream high school now (the same HS as middle son but not eldest son), something everyone predicted he would not be able to do and although I wouldn't say he is exactly thriving, he is doing enough to not be eligible for a specialist school.

Both the school and I know when he has had a trying day, at school and at home, we will have ministry of funny noises and movements, he is unable to settle to learn and in extreme times, he will become non verbal, rock and find somewhere to hide himself away (for his sats, he spent the whole time under the desk rocking). The school have to prepare him for every single change in the classroom, no matter how small, he has to be met outside the school in the morning by his helper and even a simple thing like dress down day has to be approached with trepidation.

So two children with ASD, one with complex autism, one with aspergers, both are statemented...and as most things with ASD, both completely different in how they handle it.

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