New and seeking advice

[Nora]

Hi,

 

I would be really really grateful for your help and advice… I am feeling pretty confused and unhappy.

 

My son is 10 and Aspergers was first mentioned when he was back in Year 1. I have been worried about it ever since but teachers/SENCOs/Heads have said that he doesn’t have it – “he’s very engaging” is what his last SENCO told me.

 

At first, he seemed very very bright, he learnt his numbers and alphabet quickly and was a very precocious talker. He could recite passages from books at a very early age and used to call out the isle numbers in supermarkets. It came as a great shock to see in his Yr 2 SATS results that he was behind in everything – a whole year behind in his writing. His spelling is terrible and yet he can write the most creative, imaginative stuff. He has invented several games.

 

He’s recently moved to a new school and has been looked at by an Ed Pysche for the second time. The first one didn’t think he had Aspergers. The new one obviously couldn’t diagnose but said that he certainly showed many of the characteristics of Aspergers. He is registered as having SEN and is getting help with spellings, handwriting and organising his work. The Ed Pysche said that school are doing all they can and that getting a diagnosis wouldn’t really change much other than perhaps getting advice from an Autistic specialist.

 

I am now torn between going down the route of diagnosis or just waiting to see how things develop. I kind of feel happier thinking of his as being a bit eccentric and creative and am scared of him being labelled. But then I read that children who had had an earlier diagnosis did better in the long run. I can see that it could help us train him to be more socially aware if necessary, to understand more and of course he has secondary school looming.

 

He doesn’t have any extreme or problem behaviours that are not being managed. He is ok with abstract thought, has good eye contact, is ok with routine changes and understands other people’s emotions, he doesn’t have tantrums BUT, he can talk incessantly, other kids have called him weird, he can make a lot of silly, loud noises and makes strange physical movements and facial expressions, he can sometimes take things literally, has problems with loud noises, has a limited diet and has found appropriate friendships difficult. I fear that there is low level bullying going on at school – he came home yesterday with marks on his face that had been made by the board rubber. His first obsession was trains but he never ever lined them up but he did make train noises all the time. He is incredibly smiley and friendly and will talk to anyone.

 

I am spending hours trawling through websites, answering questionnaires and coming up with Yes, No, Yes, No, Yes, No. Perhaps he is borderline if that’s possible? I keep asking him test questions to try and find an answer. I am worrying 24 hours a day. I think I need to prepare myself for them actually saying that he does have it if I go down the diagnosis route.

 

Please can anyone give me some wisdom and advice.

 

Thank you,

 

Nora X

 

[justine1]

Hi,

 

I would be really really grateful for your help and advice… I am feeling pretty confused and unhappy.

 

My son is 10 and Aspergers was first mentioned when he was back in Year 1. I have been worried about it ever since but teachers/SENCOs/Heads have said that he doesn’t have it – “he’s very engaging” is what his last SENCO told me.

 

At first, he seemed very very bright, he learnt his numbers and alphabet quickly and was a very precocious talker. He could recite passages from books at a very early age and used to call out the isle numbers in supermarkets. It came as a great shock to see in his Yr 2 SATS results that he was behind in everything – a whole year behind in his writing. His spelling is terrible and yet he can write the most creative, imaginative stuff. He has invented several games.

 

He’s recently moved to a new school and has been looked at by an Ed Pysche for the second time. The first one didn’t think he had Aspergers. The new one obviously couldn’t diagnose but said that he certainly showed many of the characteristics of Aspergers. He is registered as having SEN and is getting help with spellings, handwriting and organising his work. The Ed Pysche said that school are doing all they can and that getting a diagnosis wouldn’t really change much other than perhaps getting advice from an Autistic specialist.

 

I am now torn between going down the route of diagnosis or just waiting to see how things develop. I kind of feel happier thinking of his as being a bit eccentric and creative and am scared of him being labelled. But then I read that children who had had an earlier diagnosis did better in the long run. I can see that it could help us train him to be more socially aware if necessary, to understand more and of course he has secondary school looming.

 

He doesn’t have any extreme or problem behaviours that are not being managed. He is ok with abstract thought, has good eye contact, is ok with routine changes and understands other people’s emotions, he doesn’t have tantrums BUT, he can talk incessantly, other kids have called him weird, he can make a lot of silly, loud noises and makes strange physical movements and facial expressions, he can sometimes take things literally, has problems with loud noises, has a limited diet and has found appropriate friendships difficult. I fear that there is low level bullying going on at school – he came home yesterday with marks on his face that had been made by the board rubber. His first obsession was trains but he never ever lined them up but he did make train noises all the time. He is incredibly smiley and friendly and will talk to anyone.

 

I am spending hours trawling through websites, answering questionnaires and coming up with Yes, No, Yes, No, Yes, No. Perhaps he is borderline if that’s possible? I keep asking him test questions to try and find an answer. I am worrying 24 hours a day. I think I need to prepare myself for them actually saying that he does have it if I go down the diagnosis route.

 

Please can anyone give me some wisdom and advice.

 

Thank you,

 

Nora X

 

Hi there welcome to the forum.My son is six with Aspergers.First of all at least you have got your son some help with his work at school and I do hope it is helping him.I am quite new to all this myself (three months to be honest) so hopefully those with more experience will come and give you more advice.What I have read on here and other sites is that children can all be at different levels on the spectrum so although your son may not have Aspergers (which from what you say I personally would say he does not)he may still have ASD and along with that some other problems which he will need help for. Have you seen your GP?You need to speak to them about your concerns and you must insist on a referrel for an assesment,I think you need to do this immediatley,because assesment appt. can take up to 6 mths to come through,given his age he will be due to start high school in a couple yrs and so he need help before he gets there.In the long run a diagnosis is important so that when he questions why he is different you can explain why.I know its hard and as you mention dont want to put a label on him but it makes a hugs difference by having a diagnosis,just be prepared to fight hard for your son,people dont really listen and its all down to you as a parent to make sure he gets everything he needs.Good luck I do hope you find answers soon.

[Nora]

Hi,

 

Many thanks for your reply. The school do seem to be trying really hard although it's hard to see much progress with his writing. Am I right in thinking that he could be on the Autistic Spectrum but fall short of a diagnosis of Aspergers? Could be diagnosed as having a ASD that isn't Aspergers? Or is having ASD a diagnosis?

 

I am building up to phoning the gp but I now have half a library of books to plough through first - best to be armed!

 

Good luck with your son too,

 

Many thanks,

 

Nora

 

[oxgirl]

Hi Nora, welcome to the forum,

It's clear that you're going through a very worrying time at the moment and the dx process is very stressful. The important thing to hang onto at the moment, I feel, is that a dx (or no dx) will not change who your little boy is. That said, I do feel that dx is helpful. Secondary school years can be very difficult for AS kids and if your lad were to get a dx it could be that if he needed extra help at secondary school then it might be easier to access and more readily available if a dx is in place before he gets there. If it were me, I would go ahead and pursue a dx now rather than wait. It is my understanding that a dx of Asperger is given if there is no speech delay present. If a speech delay exists then ASD dx is given. Like my son, your son's speech was precocious, it seems.

All the best and try not to fret too much.

 

~ Mel ~

[Sally44]

Have you looked at the DSM IV Diagnostic Criteria for Aspergers?

You can also phone the National Autistic Society as they have a number of helplines. You could ask them for advice about how to get a diagnosis in your area. And also ask them specific advice about educational support.

 

I believe the major difficulty with children with Aspergers is that because they appear to develop typically in the early years, and even appear advanced, that their underlaying difficulties are not seen until they become older. As with anything, if the foundation, or basic concepts are not sound, then it is hard to build on them.

 

Therefore a child that has difficulties with some basic social interaction skills will become more noticeably awkward in social situations as they progress through primary school, appear weird to peer groups, be bullied, not understand voice tone, take language literally, not be able to use gestures or facial expression appropriately or read them in other people.

 

Problems with language will impact on both his literacy skills (and other academic areas) and social communication and interaction skills.

 

In primary school the environment is more supportive. Once a child goes into a mainstream secondary school they are literally on their own as alot of learning is 'self directed', and there is no support or structure during breaktimes or dinnertimes. Will your child cope in that environment?

 

Have a look at the types of school placement available within your LEA. You may find there is a mainstream secondary school that also has an autism unit attached. That type of school should have more experience and expertise about ASDs. Therefore it would be worth visiting schools and seeing where you feel your child might fit in.

 

In our LEA a child needs a Statement to go to a special school, or to have an Enhanced Resource place within a mainstream school. A Statement is the ONLY way of legally securing the provision your child needs in school, and any shortfall in the provision the school can provide has to be made up by the LEA. But Statements are not easy to get. Without a Statement you will get what support the school says is available, which is not necessarily the level of support your child needs. And if he needs TA support and the TA is off sick for 6 months, you have no guarantee that her support will be replaced. With a Statement which says a dedicated TA will provide XX hours of support per week, that has to be fulfilled.

 

I understand your predicament. You don't know if he will get a full dx if assessed. And if he does get a dx will that lead to a Statement? The SEN process is not an easy one. LEA's do not like to fund Statements. Many parents do end up having to go to educational tribunals to secure a Statement.

 

I would recommend you find out about the Special Educational Needs process. A child with any difficulty (and that can be social interaction difficulties, not just academic ones), should have their needs met in school. If you phone your local NAS group they should be able to tell you if they are going to do a day seminar about the SEN process and Statementing in the near future.

 

Also speak to your local Parent Partnership. They are based within the LEA and are there to support parents. They can come with you to any school meetings. If they give you advice about the SEN process. But basically if a child is struggling in school they are first placed on School Action and then School Action Plus (SAP). At SAP stage the school should ask outside professionals such as the Speech Therapist and the Educationa Psychologist to assess the child. It might be worth you asking school to move him onto SAP because of his lack of progress academically (you say he is now behind his peers?), and also for all aspects of his speech to be assessed as well as his social communication and interaction skills (that is the Speech Therapists job).

 

Put your request to school in writing and state that you are of the opinion that although he does not have a diagnosis of Aspergers, that he is showing many traits and that you feel his needs are not being met and are concerned especially with transition to secondary school.

 

From reading your posts I do recognise some behaviours as being on the spectrum. But I am just a parent and not a professional.

 

Your other option if you want to find out, would be to have your child assessed privately. But if you do that I would again recommend contacting the NAS to ensure that you see someone who is experienced in diagnossing ASDs. Otherwise you could again end up with a 'don't know' answer.

[got the tshirt]

I can sympathise with you about being undecided whether to go down the dx route, I am in a similar situation with Dd3 age 7, she is being assessed at the moment and the consultant [ who seems really helpful] feels that she is definatly borderline aspergers, whatever that means. We are going for a speech and lang assessment in December and then doing an Autism Questionaire in January. I suppose we will have to see how it goes, the consultant said it will be agreed on by all parties if we decide to go through with the dx.

Not much help to you but at least you're not on your own

[Nora]

Thanks so much for your advice and support. I'm feeling incredibly stressed, unlike dh who seems to be taking it all in his stride. When I went to pick him up from school he was spinning around in the playground much to my dismay. Of course we will still love him no matter what but somehow the future seems as if it might be different for him now.

 

It sounds like the dx process takes a while and takes place in stages which will hopefully give me time to deal with it a step at a time. I am building up to phoning the gp. I hope we get someone kind and understanding too.

 

Thanks again,

 

Nora