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ASD advice

(7 Posts)
nickala Wed 24-Apr-13 16:09:51

Hello, I have been reading all the related posts to this subject over the last few months and I must say the help and knowledge i have picked up has been amazing. It has helped me through those nights when my mind does 180...thank you mumsnetters!

I must just say that i have posted this again here as i thinnk i did it wrong the first time, sorry if this is the wrong thing to do.

I finally plucked up courage to wtite and sorry i am not familar with the lingo yet so please forgive me. Sorry i think this is going to be long, i will try and shorten it as much as possible.

My son is 6 years old and has had issues that have not been too extreme but visable mainly to family and close friends. I have really always known something was a little different about him. I wont go into it as it will take to long but they are those typical of an autistic child. After the 100th clingly moment at the school gate and being forced into school, years of worrying and wondering why things are the way they are i decided to check out his symptons online and was amazed to see that aspergers kept coming back to me time and time again. When i read through the Aspergers/ASD/Austistic signs both me and my husband felt instantly that this was our DS and the more i read the more i felt i knew what was going on.

In Feb I took DS to the GP explained my concerns and was referred to our community pead. The pead saw him, listened to our concerns and requested we go back to her in 6 months in the meantime she would get reports from school and put his name provisionally on the CDAC waiting list plus refer him to a speech therapist. She said after she meets with us again at the next appointment decisions will be made as what to do next, i think she meant keep his name on the CDAC waiting list. I think that she took us seriously however part of me felt that she did not however she has agreed to see us again so i assume this is a good sign. The pead told us that the waiting list for CDAC is one year.

The problem i felt i was facing origianlly was that the school are not picking up on any of our worries with DS as he is a good boy in school. Infact he is petrified of getting into trouble at school. The teacher asked to speak to me about my sons social struggles in the beginning of year 2, last year. He was sitting on his own all playtime. He desperately wanted to play with people but for some reason was not, he would tell me he would sit on the buddy stop and nobody would come. He hates team games and football so i guess that sets him back instantly. At this point i did not know anything about ASD so none of this and his other behaviours rang alarm bells, which i hate myself for as I should have looked into it sooner. Any issues i had raised with the school in previous years had all been noted as it is because he is a boy, boys are slower, he is shy, etc. Lets see he is in year 2, then moving it to year 3 and so on.

After our pead appointment i went back to see the class teacher to tell her what i thought was going on, she listened and said that the my DS is considred as shy and quiet, doesnt talk to adults, struggled socially but is getting better so is not a problem anymore. Struggles a little academically but is the youngest in class and as there are alot of boys like this in his class teachers say it is no different to other boys. Nothing is sticking out as being totally different, he struggles with some things but so do some of the other children. It would only be in year 3 ie juniors that they would expect changes. I told her that i accept this but i feel strongly that something is going on and that I will leave it for now and be back in touch. I also spoke to the SENCO who listened but didnt have much to say......i think she thought i was a little crazy! She told me that she is not trained in ASD and basically i dont think she had a clue as lovely as she is.

The little boy in the classroom is nothing like the little boy at home. Dont get me wrong he is the most loving child ever, has a good heart, no problems with affection especially towards me, he is amazing and just super but he has times when his demands, routines, obsession and other behaviours are extreme to bursting point.

If you are still reading this...thank you.

So, whilst waiting for our next NHS appointment I decided that i needed some kind of professional confirmation that I was not going mad as too date both professionals i had seen had made me feel a little like i was on another planet (school and pead).

I decided to have my DS assessed privately, I spent a lot of time finding someone i trusted and he had a full comprehensive assessment that covered everything but he did not have any assessment specific to ASD's such as the CARS or ADOS.

The clinical physcologist who assessed my son has given me all his scores and has said that she is confident my ASD suspicions are correct. I am still waiting for the full written report but off the top of my head she told me he has no theory of mind, no abstract thinking, shockingly low scoring for verbal skills, cannot express or understand different emotions to name a few. Unfortunately she cannot give an official diagnosis and we would need the ADOS in order to do this. She can do the ADOS but I am not sure what to do next, do i fork out more money privately, do i wait for the NHS. I just dont know what to do. A year seems so long.

I feel understood that someone is finally accepting what i am trying to say is going on and has seen it for themselfs and acknowledged it. It is a great relief although deeply upsetting at the same time.

We are due to go back to the NHS in 3 months and I have also provisionally booked an appointment with Daphne Keen in Sept (Thank you mumsnetters). I will stick with the NHS no matter what as i have read time and time again that the NHS dx is essential.

Our private physcologist has said that she is going to call our NHS pead and discuss her findings with her and send her the report on my son. i am hoping that this will make things easier for us to get our son dx.

I fell that a dx is important in order to get our son help and I do not want to approach the school again without it as i feel they will still poo-poo me. Our phycologist has given us lots of help and advice with ways to manage things. I finally feel like we can move forward. I am so worried about my son but i know there is many of us in the same boat.

Thanking you in advance if you have any comments or suggestions.

PolterGoose Wed 24-Apr-13 16:16:48

Message withdrawn at poster's request.

AttilaTheMeerkat Wed 24-Apr-13 16:28:44

Re school I would now write to the LEA and apply for a Statement of special needs for your son. That may seem a bit drastic but it will make people also sit up and take notice.

You will need to write to the Chief Education Officer at your LEA and give them six weeks to reply. Also you neither need a diagnosis or anyone's permission to request a statement.

IPSEA's website is very good with regards to the whole minefield that can be the statementing process. Statements can also help with social and communication needs as well as academic ones.

Is your son on anything like School Action Plus at school?. He should be as there has already been outside involvement i.e the community paed. Is there an IEP (Individual Education Plan) in place for him?.

Read the NAS website (National autistic Society) website if you have not already done so.

Another area you may want to look at is applying for DLA on his behalf.

Many teachers within school are simply not trained enough to effectively work with children who have additional needs let alone those children who are on the autistic spectrum. My cynical side says that if they are not overtly disruptive and thus quiet and uncommunicative they get ignored and become lost within a class of 30. Your son is no exception to that given what has been said to you already i.e he's a boy, boys are slower. Its all crap on their part and they have let him down. He is clearly struggling at school socially and that could also affect his ability to learn effectively.

Junior school can be a real hardship for children who cannot readily read unwritten and unspoken social cues and your son is already being left out socially.

You have acted admirably to date and have sought help for your son, I think you have and are doing great re your son. You are his best - and only - advocate here. Never forget that.

beautifulgirls Wed 24-Apr-13 16:48:21

Stick with this - you are following the right track and frustrating though the time is for this all, getting the paperwork right at each stage of the way will help in the long run. I agree a statement is likely to be needed, but I will also say that you can expect to meet a brick wall in getting one right now at least. Be prepared to fight every step of the way as the local authority turn down your requests for assessment and then refuse to issue a statement if you manage to get them to assess etc.

The problem you have with the school is the same as we have faced with our daughter, but I had the advantage that her infant school took me seriously and listened - it is her junior school that have doubted it all. Another mother I know told me that my daughter is being so exceptionally good at school to avoid the confrontation and stress it involves. They are very good at hiding this stress to the outside observer - after all to be asked if everything is ok is then to have people in your personal/emotional space - and so that in itself is stress. School tell me my daughter is happy, I tell them she hates school, she is stressed out by the time she gets home. She bottles it up and saves it for when she can finally express herself without fear of further overload. Actually I am lucky, she is a good kid and I know we have far less to deal with behaviour wise than many parents do here, but none the less the stress is very real and very hidden in school, and I would imagine the same is true for your son. The school need to be educated into understanding more about hidden disability. Just because a child looks ok and behaves well does not mean that everything is fine underneath.

What would I do from here? I would take the report you have and share it with the school. You need to work with them on this, so you need to get them on side somehow, and maybe to a start would be to sit down with them a week or two after the report has been shared with them and try and discuss the findings and the implications. Share with them the points you found surprising, let them know that you appreciate that given the external appearance you can understand why they don't see his problems and ask them to start to be more appreciative of the difficulties that we now know are very real. Explain you will be looking into getting this all formalised in the future and ask them to start helping keep a log of his strengths and weaknesses so that you can all work together with strategies to help. If you get the school on side and start getting these things documented formally it is going to help your case to get a statement at the point you do go for this. Make sure you document any meeting or agreed strategies, even if just an email to confirm what was said so that you leave the paper trail that backs you up longer term.

nickala Wed 24-Apr-13 19:34:26

thanks for your replies I am so grateful..

The NHS Pead made a point of telling me that my ds will not get statemented as he is coping in school. he did some writing when we was in her office and she pointed to him writing as she said this. I did not realise that statements can help with social and communication issues too.
Sorry to be dumb but what is school action plus/DLA & IEP? he has none of these. I have looked at the NAS website but not in great great details so will go back again and have a look at the other suggessted websites too.

He tells me he doesnt like school because it is too long. I try to ask him questions about things but i dont get a lot back really. How do i find out if he is really struggling in class and hiding it or do i just know that he is because of the issues he has. Sorry to sound to silly I know that statement was stupid.

I think school would now argue that he is coping socially in school. I guess my report from the private physc will prove that he is not fine albeit he may seem to be.

So i should try and get the statement ball rolling....I have heard that are LEA are notorious for not giving statements.

nickala Wed 24-Apr-13 19:38:21

sorry pressed go to soon....
thank you so much and i am going to follow all the advice given. i do need to try and get the school on my side and i will suggest a meeting with them again soon. i am just waiting on the finalised report to come through. I doubt they will not do anything if they dont really have too. I guess its hard to know until i talk to them. My ds teacher is very good and very nice hopefully she will want to get him some help.

CyrstalStar Thu 25-Apr-13 16:45:24

How do I go about getting an IEP for my ds please? does he not need a diagnosis for this?

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