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I think my 5 year old son is Asperger's, what do I do now?

(16 Posts)
BikeRunSki Mon 03-Feb-14 12:54:06

It has taken years of my frustration that DS's behaviour did not seem quite right and people telling me that
- What do you expect, he's a 2 year old boy (chuckle!) ?
- He's just a bit busy
- We'll, he's just got a baby sister
- He's bored, he'll be OK when he starts school (v early Sept birthday, long frustrating extra year at home/nursery)
- He's upset that you've gone back to work
- He goes to nursery too much/not enough
- He's just settling into school

Well he has been at school for nearly 6 months now (Reception) and he behaviour is NOT standard, it is not normal, his emotional response is extreme. He gets in a lot of trouble, but he is not a naughty boy (but becoming labelled as such).

My reasons for thinking Asperger's -
- He obsesses about things - curretly Lego, previously fire engines. I know these are normal young boy interests but his level of interest is all consuming. HE has been "living" as a Minifig for several weeks.
- Any situation he doesn't like, or if he is bored, he screams. Not a cheerful, playful or even scared scream, a real ear piercing, Horror Movie, shrill scream. And he repeats it over and over several times. He has recently started to scratch too.
- He knows what he does is wrong (when he scratches) and is clearly upsetm but he can's stop himself doing it again. His best friend (they have know each other literally since the day the bf was born) no longer wants to be his friend, and the bf's mum has said the same to me.

How do I pursue my suspicions? How do I get him investigated? What will happen? Can he get extra emotional/social help at school (academically he is doing fine)? I have heard about "Staements" - what are these, does having one blight a child throughout school? Does it help? I am scared of him being wrongly labelled, but I am scared of him carrying on as he is. I'm so, so scared and I have no idea what to do.

orangepudding Mon 03-Feb-14 13:01:52

Have you spoken to thé school senco? They may refer your son to an ed.psych if they feel his behaviour warrants it.

BikeRunSki Mon 03-Feb-14 13:08:29

DO I go via his class teacher?

Goldmandra Mon 03-Feb-14 13:10:44

Don't go through the school.

Go to the GP without your DS and explain what you have said on here, just as bluntly, if not more so. Ask for a referral to a developmental paediatrician or CAMHS, whichever service does neurodevelopmental assessments in your area. Be prepared to push hard for this and to wait months for an appointment to come through. Waiting lists are usually long.

Contact the school, tell them that you have asked for him to be assessed for High Functioning Autism but don't say you think he's got it. Ask them to try interventions that are know to support children with ASD and record whether they are successful.

What do you think the school could do to help him? Feel free to ask them to do it.

He doesn't have to be failing academically to get a statement. He has to need more support than the school could be expected to provide from their current resources and that is quite a lot.

Read up on Asperger's yourself because the better informed you are the less you can be fobbed off by ill-informed professionals and there are plenty of them about.

Does he have sensory sensitivities or is he sensory seeking? Does he get upset about changes in routine? Does he struggle to follow social rules that children usually understand instinctively?

FloJo151 Mon 03-Feb-14 13:16:18

hi, we have just been through the process of getting ds1 assessed. (he is 8 now). the process started when he was 7 so its taken a year.
( i think that's pretty standard though). I started by going to the gp on my on (with lots of notes so I didn't forget anything!) and explained my thoughts and reasons. She then referred me to a community peadeatrician. We then waited for an appointment to come through and went to see the pead (me and ds 1). I explained to ds1 that we were going to see the doctor to talk about the things that he is really good at and the things that he finds tricky. the paed talked to me and asked lots of questions about how ds1 is/has been in the past, any significant things that made me think that his behaviour/response was not 'normal'. she then did a few things with ds1 (like getting him to walk in a straight line/ balance on 1 leg etc). She then said she'd pass the info on to the asd (Autistic Spectrum Disorder) team who would get in contact with me and let me know if they felt he needed to be assessed. hey also asked for a report from school. we then waited (this took the longest time!). they then gave us an appointment for us as parents (no ds1 to attend) as they wanted to do a special 'interview' type thing where they asked us lots of questions about ds1 and we had to give our gut response (ie not think abut the answer too much). they then made an appointment to assess ds1. I was allowed to watch from another room. Basically they just did some games with him and chatted as they played. They then went away to discuss with the team and made another appointment with us to talk about the outcome(diagnosis).

sorry that was so long but that's the process we went through as ds1 was 'holding it together' at school and not really displaying the same behaviours as he was at home. (now he's older though it is starting to come out at school aswell).
in the diagnosis report there were recommendation for the school to do so I had a meeting with the school Senco and the class teacher to go through them.

have you spoken to school about your concerns as it might be that they have picked up on something aswell and you might be able to go through them to get him assessed. (they will get an education psycologist to assess him)

hope this helps!

MomentForLife Mon 03-Feb-14 13:17:36

Hi, my brother has been diagnosed with Aspergers for about 12 years. Just so you know, the title Aspergers might not be used pretty soon for diagnoses. So silly because it is it's own set of characteristics.

Write everything down to take with you to school, drs etc. You're his Mum and know him best. Been going through similar with DD.

ooerrmissus Mon 03-Feb-14 13:28:12

thanks for you.

As PP have said go to your GP and get them to refer you on. Also ask school if they can ask for an Educational Psychologist to come and observe him. DS1 (just diagnosed aged 8) had several visits and they were really helpful for school to get new ideas of how they can help. Break times were the worst for him; he was lost without some sort of structure.

blueberryupsidedown Mon 03-Feb-14 13:51:28

Can I suggest that you write down your concerns and send it to the school/teacher/senco AND your GP, then make appointments with both. In my experience, going through the school took a longer time than via GP. Write your concerns in categories - labelled 'areas of concerns'. a) behaviour; b) communications; c) physical etc. There's no need to go into details with examples, but direct, short sentences (ie. 'he screams loudly and is in distress when..... This happens X times a week on average' and 'he focuses on one game/toy to the point of becoming obsessed with it' etc). Keep a diary if you need to. In my experience, the school Senco is good at coordinating the response but the actual diagnosis will be through your GP refering to a specialist pedeatrician or team (which might or might not include a speech therapist, a physiotherapist, a psychologist). The process takes a long time.

A statement of special education needs comes much later, if at all. Many children will special educational needs will not need a statement, and will require what is called an IEP - Individual Education Plan - to help with school, learning and social skills. A child can be on the school special needs register and then come off it when he/she is better or has adjusted and doesn't need anymore help. DS has Dyspraxia and Verbal Dyspraxia and struggled with adjusting to school but now in year 2 he has been taken off the special needs register and doesn't need any extra help or support from the school. In my experience, it is not a label that stays with them if that's a concern. You are much better off knowing if there's a real issue with your son, rather than not knowing and not being able to use the tools and resources available to him.

BikeRunSki Mon 03-Feb-14 18:27:41

Thank you all for your advice and kindness. You have all made me feel better, saner, for the first time in a long, long time.
I have made appointments to see his teacher and our GP in the next week or so. It may be something or nothing, but we need to know.
Interesting about playtimes ooermissus, DS finds them hard too.

orangepudding Mon 03-Feb-14 20:38:45

I had concerns about my son so the school senco suggested taking ds to the gp. The gp said as he was at school the school had to make any referrals ! He is seeing an ed psych next month, I will take the report to the gp if he.needs to be referred to a pead.
It can be a frustrating process to get help.

Goldmandra Mon 03-Feb-14 20:43:06

The gp said as he was at school the school had to make any referrals!

That's rubbish! My guess is that the GP just couldn't be bothered.

Don't these people realise what it takes to go to these appointments to open a dialogue about your child's neurological development? Why make it harder than it has to be?

MsAspreyDiamonds Mon 03-Feb-14 21:09:54

ladyquinoa Mon 03-Feb-14 22:08:15

Look on the national autistic website and see how your son fits into the picture. Assessments often take place aged 7 at school. Schools don't like to spend the money if they don't have to

BikeRunSki Fri 07-Feb-14 22:48:19

An interim update - I had a meeting with DS's class teacher and TA on Thursday afternoon. They were both lovely and agreed with all my concerns, and teacher also said she was beginning to think that there were some behavioural issues that she should maybe raise with me. They told me that I have their full support when I go and see my GP next week. They are going to see the SENCO about what I said to them too. So nice to know that I am not being "precious" and someone else can see that DS has some issues.

staTementer1 Sat 08-Feb-14 11:24:24

I came across this page by accident so have not read all comments carefully so apologies if I'm repeating anything. I'm glad you have taken the step to see your child's teacher. Its always good to get help. Remember you know your son best and your instincts will tell you what is 'right'. I soldiered on for years with my daughter who has moderate learning difficulties, and I suspect is also slightly autistic, before becoming more pro-active, always taking the advice of the Educational Psychologist as gospel in assuring me that she was 'within the normal range', when in fact what that meant was 'if you get a Statement and we have to provide extra help its going to cost us'. Also one never wants to have ones child labelled, so you keep your head down and hope it will all come right. I knew about statements but didn't fully understand. Eventually we started the process of a Statement when she was about 10, but it takes a long time and a lot of effort on your part and waiting for reports etc. I don't know if things are any harder/easier now. Remember its really just a legal device to make sure that you can get as much extra assistance as your child needs so I would strongly recommend that you get going on it now so that you can get as much expert help at school as possible. My daughter was 12 and at secondary school when she finally got extra dedicated help. On the bright side, she is now 37 and has worked, married and has two delightful children of her own. Good luck.

Jellyandjam Sat 08-Feb-14 11:34:09

On the gp referral issue, we had a long fight just trying to get a referral for a hearing test to rule out for my son's speech issues. Our private SALT told us that if a gp makes a referral it comes out of their budget so they prefer to pass the buck to somebody else!!

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