Advice please on possible aspergers

Blakespops

Hi all,
I am a disabled wheelchair user, my wife is my carer although I only get low rate care on DLA and high rate mobility. Our son (5 YO) is such hard work and we were putting it down to me being injured at first but his school say they think he has aspergers. once he gets an idea in his head it is that way or no way, this causes problems at school but also at home as he hates change to daily routine, he also takes what you say literally i.e. "come on there is an ice cream with your name on it if you win me home, his response when we get home is to refuse the ice cream as it is not the one we told him had his name on it. yet in reading he is reading at year 4 level and is in the “gifted“ programme in the school as he is very bright. As with my illness this is where we have so much of a problem as one day I may be able to play with him and the next I may be in bed unable to move for 5-6 weeks and can not give him the time he demands.
The school are having a behaviourist look at him and work out a plan for school but as this has come out of the blue we do not know what to do next. Do we see a GP for a diagnosis? Is there anything that can be done to help him? Is this something he will grow out of? Any and all advice is much appreciated as reading some things on Google are confusing to say the least.
Thanks in advance

Prinzessilein

I have Aspergers, and maybe I can help answer a few of your concerns....

The first thing you need to do is to work with the school. They may be prepared to fund testing for your son. Talk to the SEN coordinator and ask for a clear explanation of what tests are going to be done. If this does not include an assessment for Aspergers, then your GP can certainly arrange a referal to a specialist who will assess your son.

It might help if you look at the Autistic Society web pages. They have some very good information on Aspergers.

If you son is diagnosed then the school will be able to put in place a dedicated plan to help him. (Even if it isn't Aspergers, the tests they are arranging should help set up a support plan).

You might want to consider DLA for your son. Does his condition mean that he has more care or mobility needs than an average lad of his age?

If he has Aspergers then look and see if there are any local groups that meet - they can give valuable support to the child and to parents.

Do you have access to a social worker? I admit I was resistant when I first had a social worker assigned to me, but he has helped me to find out exactly what I am entitled to and to move into my own accommodation (which won't be an issue for your son for a few years!)

If it is Aspergers then he will not grow out of it. However, some of the symptoms can be treated. Each patient is different, but there is a fair chance that he will be able to manage his condition. I not only worked, but held down a position as Head of Department for some years. The school and your GP are the best people to help you understand exactly how much your son will be capable of.

THe best thing you can do to help him os to get him diagnosed. If it is Aspergers then read up on the condition and support him to live as independently as possible.

Blakespops

Hi, Thanks we will chat to the GP when we get a chance but may do it without Son there as he always wants us to explain what we are talking about and why we are talking about him even if it is to his teacher. He always interrupts and says "but wait...what do you mean?" he always take things literally too. The dinner ladies at school to him it was time for his class to go for dinner and as he was lagging behind she told him to hop to it and he hopped all the way to the dinner hall and asked if he could stop hopping to carry his dinner. he does not yet get jokes and you have to explain them to him.

At first we thought the changes in him were down to when I was injured and we have as a result made excuses for him and tried to spend as much time with him as possible but he is so demanding of our time and he does not seem to understand that I cannot physically cope every day and some days my pain is such that I cannot play but could read to him.

As bad as it sounds but during previous school holidays we looked forward to the day he went back to school by the end of holidays, based purely on how demanding he is of our time. At least if he has got this then we will know and will be with the knowledge being able to work out how best to help him. By educating ourselves on this and maybe with GP/School help he will get all the support he needs.

As for DLA I did not even think about that and as he has not been formally diagnosed yet will not be able to claim yet anyway

Prinzessilein

It does sound like he has Aspergers!

You do not have to wait for a diagnosis to claim DLA. It is not awarded on the basis of a diagnosis but on need. If you can show he has more care and/or mobility needs than a 'typical' boy of his age you could claim. I would suggest you start a diary - keep it for two weeks. Write down everything you have to do for him. Get the school to record some input too. The take your diary to a welfare/disability organization like DIAL. They will be able to help decide whether or not it is worthwhile applying. They will also deal with all the paperwork/appeals for you. (You alread claim DLA for yourself, you know it can be difficult to fill in the forms!)

As he gets older maybe there will be hobbies that use up soem of his reserves off energy - and he will be able to read more and find out the answers to some of his questions (Be prepared for lots more questions too!) ...and maybe some after-school clubs (if he is happy to attend) would give you an hour or so of peace.

kazzah60

Blakespops wrote: »

Hi, Thanks we will chat to the GP when we get a chance but may do it without Son there as he always wants us to explain what we are talking about and why we are talking about him even if it is to his teacher. He always interrupts and says "but wait...what do you mean?" he always take things literally too. The dinner ladies at school to him it was time for his class to go for dinner and as he was lagging behind she told him to hop to it and he hopped all the way to the dinner hall and asked if he could stop hopping to carry his dinner. he does not yet get jokes and you have to explain them to him.


My eldest son has Aspergers and also semantic pragmatic language disorder and he is EXACTLY like your son with his reading ability-at 7 when he was finally diagnosed he could read text books meant for 12 year olds- yet he couldn't comprehend a simple story - one of the tests he underwent was to read a short paragraph about aninals in the jungle and then asnwer very simpe questions - the answers to which were contained in the text- but he could not do it- he could read the words but they meant nothing to him.

he also takes things literally - when he was about7 he got a very sore throat and croaky voice and I said to him " oh you have a frog in your throat today"

about an hour later he wandered up to me and said " when will it go?"
and I said " when will what go?"
and he said " the frog in my throat, when will it go?"
he thought he literally had a frog in his throat

he is 20 now- and he does understand things more now - but he is still unsure of sarcastic comments and ironic comments - but he can understand jokes and doesn't take things too literally now - but he has had a lot of input from our local Child and Adolescent mental Health service team and he used to go to a social group with other kids with aspergers every 2 weeks and the team there worked on their understanding of things - so that helped a lot.

I hope you get some help for your son - do press for it - and if you get offered help from Chils & Adolescent mental health services - don't be scared by their title to take the help - theya re often best placed to help you cope,
KAren

Savvy_Sue

First day at Nursery, me to DS1 when I picked him up: "Did you have a good time? Did you make any friends?" "No, because they did not give me anything to make friends with."

I think they suspected something was going on by the time he left, but he was 12 before I was told it was probably AS. All that time he'd been 'different', but never to the extent I'd wanted to camp out at the GP surgery until someone told me what was 'wrong' with him - and of course there's nothing 'wrong' with him, it's just his brain is wired differently.

Anyway, there's a long thread on the Families board which you might find helpful when you have some time to spare. My instant suggestion would be to work with what you've got: accept that pedantry is an art form, and say exactly what you mean, avoiding figures of speech unless you are able to explain what they mean, every time ... Work out what you can keep consistent, and keep it consistent, and do your best to find ways of communicating what has to be 'provisional'.

My next one would be to buy or borrow from the library The Blue Bottle Mystery, and other books by the same author, Kathy Hooper I think but it's too late to Amazon it. It's a great story to read to a younger child who has or may have AS, IMO.

And while you're hunting down books, Tony Attwood's Guide to Asperger Syndrome for Parents and Teachers is great too, although the latest edition may have a slightly different title.

leongal12

The National Autistic Society website is really useful. Please be aware that it is called a spectrum for a reason and your son is just as much an individual as he was before school talked to you and you have not even got to the diagnosis bit. What happens for one child does not mean that it will happen for another so as you look at everything remember . School will be clear about how a diagnosis is made- it is usually a combination of professionals- teacher, dr, clinical and/or educational psycholgy, speech and language therapy. Don't be surprised if you get a referral to speech and language therapy- it is not just about being able to say words- they also look at the pragmatic language issues that you are talking about- the literal translation. There is another really useful book- designed really for children slightly younger but if you do a search for Early Support- information for parents of a child undergoing or recently diagnosed with Autism it is really good- lots of info not only about ASD but also about assessment, support groups, information, benefits. If they are still in print they are free from government publications- I don't knwo if they are still in print but you should be able to download. At school discuss his needs with the Special Educational Needs co-ordinator and his teacher. He may need an Individual Education PLan to look at the things he finds tricky- turn taking in conversation, appropriate behaviour in assembly etc. There is a great game called Pull you Socks Up which is a matching game for children with similar language needs.
And don't forget, whether he gets a diagnosis or not there are loads of really successful people out there with an Autistic Spectrum Disorder...some very very successful computer programmers have a diagnosis because computers are as literal as it gets!

Dippypud

Blakespops wrote: »

Our son (5 YO) is such hard work and we were putting it down to me being injured at first but his school say they think he has aspergers. once he gets an idea in his head it is that way or no way, this causes problems at school but also at home as he hates change to daily routine, he also takes what you say literally i.e. "come on there is an ice cream with your name on it if you win me home, his response when we get home is to refuse the ice cream as it is not the one we told him had his name on it. yet in reading he is reading at year 4 level and is in the “gifted“ programme in the school as he is very bright.

Hi Blakespops,

My son,(now 22), has Aspergers.
He was diagnosed at aged 8, he gets DLA, (LRC, LRM), as he needs supervision at times. Gather as much info on the condition as you can.
Try the " Contact a Family" website they are brill, with local groups if you feel you need to talk to someone who knows what your going through.

You will go through some roller coaster times getting a coping skill going, but it's worth it.

Regards, Pud