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Is this Aspergers??? (long-ish, sorry)

(27 Posts)
imogengladheart Mon 29-Aug-11 10:55:05

Message withdrawn at poster's request.

AspergerFiction Mon 29-Aug-11 11:06:00

It is possible that he mat have AS. Either way you need to find out.

Parents often know - long before so-called professionals catch on. If you have read Tony Attwood's book (which is excellent) and it fits 85% then you certainly should pursue it further. If it is Asperger's the last thing he needs is teacher who shouts all of the time and boys who torment him.

A lot of the problems of Asperger's stem from anxiety and stress. It sounds as though your son is under a lot of stress.

The teacher sounds like a nightmare. Telling a child with AS 'to hurry up and get on with it' is like telling a deaf child to hear. A child with AS can't just get on with it because half the time they won't even have a clue what it is they are meant to be getting on with.

AspergerFiction Mon 29-Aug-11 11:06:27

may

makemineaquadruple Mon 29-Aug-11 11:13:54

Well i'm no expert or professional so I really can't say. All I will say is yes, your ds obviously sounds like he has issues, it's just finding out what they are and exactly how much they will afffect him.

You will always get some people saying that it's just you and that you're paranoid etc, but from what you've described I would be surprised if you're wrong.

I still get people saying to me(teachers included) she's not behind atall. The only problems she has are behavioural and they're learning to deal with that. We'll see how she gets on when she starts full time next week. confused

I'm not sure how you kept your cool with the "teacher" who called him stupid etc. I think I might have had to be restrained if dd's teacher said that to her.angry angry Thank goodness that teacher isn't in contact with your ds anymore.

Where exactly are you now with regards to assessments etc?

Ineedalife Mon 29-Aug-11 12:03:50

I think you should try to get him assessed again, we have gone down this route with Dd3. Family and rubbish school just kept saying she was fine and made me think I was imagining the issues.

My advice would be to get as much down on paper as you can, keep a diary including all episodes of unusual behaviour and how you dealt with them. You need to show that you are consistant to stop them blaming your parenting.

Sorry if that sounds harsh but thats how it is.

Don't give up and grow a thick skin, shout from the roof tops if you have to. You are your sons advocate and he needs you to get him assessed.

Good lucksmile.

Ineedalife Mon 29-Aug-11 12:05:30

Oh and by the way... welcome to the board and keep coming back. There are loads of poeple on here with loads of experience. Some are away at the moment so its a bit quiet.

bedheadz Mon 29-Aug-11 12:06:07

My heart goes out to you and your boy. Have you been referred to the community paed? I would go to your GP and ask for a referral.

re:the shouty teacher and mean boys, y ds had this in Y1 and was a nervous wreck, nightmares etc

coff33pot Mon 29-Aug-11 12:23:10

I am not a professional either and my DS is now being assessed for AS. It does sound that there is a possibility he has a few traits but you really need to go to your GP and demand a referral. Bullying and teachers who "dont have time" irritate me no end. DS was bullied constantly daily and after a few weeks it resulted in him snapping and having a bad meltdown and the bully in question got hit back as a result. DS was the one who was dragged in for bad behaviour even though I had reported several times that there were issues with a certain child and to keep them apart. He lost trust in the teachers after that so wont ask for help again.

You are mum and you know best. If deep down you know something isnt right then dont give into them and take their unhelpful comments. Do they have a SENCO at the school? Have you had a meeting with the head?

imogengladheart Mon 29-Aug-11 12:43:19

Message withdrawn at poster's request.

IndigoBell Mon 29-Aug-11 12:48:27

Having a good (and pedantic) vocab is another trait of Aspergers.

Don't go back to CAMHS. Go to your GP and ask for a referral to a child development paedetrician.

In some areas CAMHS diagnose Aspergers, and in some areas paedetricians do.

paranoid2 Mon 29-Aug-11 16:30:45

A SENCO is the schools special education needs co-ordinator, Every school should have one. Sometimes if the school is big its a full time job but I think most of the time its one of the teachers

imogengladheart Mon 29-Aug-11 16:38:43

Message withdrawn at poster's request.

IndigoBell Mon 29-Aug-11 17:06:22

A SENCO cannot diagnose. They are a co-ordinator. It really is just their job to check stuff is done. In some schools they do more than this, ie run interventions. But they certainly don't have to. And they are definitely teachers not medical profs.

It would be their job to ask the ASD outreach team to come in and advise, or to organise a social skills group for your son, or to make sure he has somewhere quiet he can go.

Either CAMHS or a paed diagnoses. It's different all over the country. Go to your GP, say you think you son has Aspergers, and ask for a referral to a child dev paed.

A diagnosis will probably not lead to a lot of help, but it is still an important first step to take.

Read these boards. After a few months you'll be an expert smile Then you'll be able to help your son.......

dolfrog Mon 29-Aug-11 17:12:55

imogengladheart

Aspergers, Autism, dyslexia, etc are all diagnosed based on criteria based on subjective observations. Which were the best option available before the 1990s and even more so now with the introduction of neuroimaging, and other scientific technological research advances. Research has more recently made some rapid improvements in the understanding of the neurological and genetic issues which can underly these types of problems.

The issues you have mentioned could all add up to being traits of Aspergers but individually thye represent various underlying disabilities or disorders, which combine to cause Aspergerish behaviors.
Currently there is a close links with ADHD, Auditory functions, and Visual functions, and as research progresses there could be more.

You could have a look at my PubMed research paper collections listed on my Invisible Disabilities web page and more specifically at the ADHD, Auditory Processing Disorder, Scotopic Sensitivity Syndrome, and Hypercusis research paper collections.
you may also find the CiteULike Group: Autism - library 189 articles which includes many Asperger related research papers.

Ineedalife Mon 29-Aug-11 17:45:49

As others have said it varies from area to area. My Dd3 has been seen by developmental paeds, community paeds and CAMHS. All could potentially diagnose.

When our paed left the area Dd3 was passed on to CAMHS as there was no one else available.

This can be a long process [especially with able children] with much passing from pillar to post but if your Ds needs a diagnosis then you just have to go with it.

Your GP would probably be the best starting point, is he/she any good? How long have they known your Ds.

I know what you mean about the traumas of seeking a diagnosis[dx] but think about your ds in secondary school, it comes around really quickly and is a tough step even for NT kids. Without support your ds could really struggle.

We went round and round in circles for many months trying to decide whether to seek a dx for Dd3, we are not through the process yet, but lots of things have come to light along the way, which have helped us to help her.

Good luck whatever you decide to dosmile.

coff33pot Mon 29-Aug-11 18:04:51

The SENCO at our school is the Head. It was she who raised issues with my DS behaviour. Initially it was just mountains of phone calls to collect him and he was then put on SA (school Action) then SA+ with an IEP (individual education plan) But to be honest your school sounds very stand offish in recognising that there is a problem.

The school insisted it was just bad behaviour. I wasnt so sure and went to see my GP and expressed my concerns. He referred us to a Pead but in our area the Pead doesnt dx and said it was all way past her experience and referred us to CAMHS. They have a multidisiplinary team that goes through the motions and can dx as a team. However I am seeing a Psych on his own CAMHS to do have full team at moment but he can dx. So you see it varies greatly from area to area.

I would say to you that the time you have a dx or the time you have letters indicating that your son has issues is the time to need to approach the SENCO as it seems to me the only thing that is going to spell anything out to your school is black and white print smile and have a meeting about what they can do to help him and if they will help him. Personally if they wont then I would seek out a school with an inclusion policy for SN.

bedheadz Mon 29-Aug-11 19:01:05

In our area, the Comm paed first then onward referral to OT for sensory and fine motor skills, Physio if their are any problems with gross motor skills and then CAMHS for ADOS. it is multidisciplinary so after the ADOS all the proffs will meet and decided dx or not.

It is a long process, we have been in the system since May 2010, we have seen the above multiple times barr CAMHS as their is a long waiting list for ADOS. From what I have read from other posters this is the norm and it can take years.

good luck, hope he has a good year in school.

imogengladheart Mon 29-Aug-11 20:22:01

Message withdrawn at poster's request.

nenevomito Mon 29-Aug-11 21:50:58

Hi - going through this at the moment.

I've looked into private assessmet & diagnosis. The price quoted by a leader in their field was £600 for the assessment and the report.

As it is my experience has, thankfully, been much better than yours.

The school raised the issue with us at first and brought in the educational psychologist. She did the CCC 2 (childrens communication checklist) and BAS II (British ability scales) tests with him which gave strong indicators of ASD. They put him on School action + and started treating him in school as if he had been diagnosed and have been brilliant.

In the mean time I went to my GP and asked for referrals to a developmental paediatrician and the child dev clinical psychologist. School also referred DS to the SALT (speech and language therapist) to help with his social communicationl, which is poor even though his vocab is excellent.

We've seen the Paed who has said ASD. We still need to see the Clinical psychologist and SALT and once he's met with them the multi-disciplinary team will agree the specifics of the diagnosis.

My advice is to get to your GP and ask for referrals to dev paed / psychologist got assessment for ASD. Speak to school and let them know what you are doing and ask if it would be possible to get the ed psych in to assess as well.

If you don't have any joy and you could possibly go private then it may be worth considering.

Ineedalife Mon 29-Aug-11 22:27:06

I would definatly[sp] talk to your GP first and school if you think you will get anywhere.

If caring for your Ds is having a negative effect on your health you might end up going down the private route, just to get it done quicker.

Lots of private proffs also work for the NHS so you might end up seeing the same proff but much quicker.

The trouble with some schools IME is that if they are not aware of AS they can miss it easily. Teachers get hardly any training in SN's so are not always good at spotting things.

We had to move Dd3 to a more inclusive school where they have children with many kinds of SN's.

She is thriving now whereas before she was suffucating and anxious all the time.

Is there any chance of looking at other schools for him??

Am off to bed but will check back tomorrow.

imogengladheart Tue 30-Aug-11 12:54:14

Message withdrawn at poster's request.

Ineedalife Tue 30-Aug-11 16:45:06

I would say it is not "normal behaviour" what ever that is.

It is really common for children with high functioning autism/aspergers to be almost saintly at school and then explode at home.

The trouble is that they work so hard to fit in and not be quirky at school that the need to vent at home.

You need help, before your son gets any bigger/stronger or before he goes under a car.

Go to your GP and tell him/her what is happening on a daily basis.

In the meantime you need to find a way to let him know that his behaviour is unacceptable, we use a yellow and red card [like the footballers].

Dd3 gets a yellow as a warning and then a red means she has to sit at the table or leave whatever she is doing.

Don't worry about venting on here, thats what we are here for.

Please go to your GP ASAP

imogengladheart Tue 30-Aug-11 21:28:19

Message withdrawn at poster's request.

moosemama Tue 30-Aug-11 22:06:25

imogen, just seen this thread.

Your poor little boy! No child deserves to be treated like that at school. From being told he's stupid and called names to being shouted at for not being quick enough.

From what you've said, it does sound like he needs proper assessment and you need to do this now as once he moves up to juniors things will get harder for him. My own ds1 has Aspergers and he completely fell to pieces when he left infants and went into juniors, despite it being a primary school and him staying with the same class he'd been with since nursery. Its take us two years to get him back to anything nearing coping.

You need an action plan.

1. Make an appointment with your GP. If you want to, arrange a telephone consultation in the first instance to discuss your ds without him present, then arrange to take him in for the GP to meet. You are asking for a referral to a developmental paediatrician, from there they may refer him on, or in some cases they can do the diagnosis.

2. Start looking into alternative schools that you could move him to. The one he's at is refusing to recognising his additional needs and failing to support him. By doing this they are in direct contravention of the Special Educational Needs Code of Practice - they have a duty to support him and differentiate for his additional needs in order for him to access the curriculum and make the most out of school.

3. In the meantime make an appointment to meet with the Special Educational Needs Coordinator (SENCO) at your son's current school. Personally, I would do this by writing to them with my concerns in the first instance and ask for a written response, plus meeting. (I learned this from our Autism Inclusion Team who say you should aways put everything in writing to the school as it all adds up to evidence you may need later.) He should at the very least be placed on School Action, which means he has been identified as having some additional needs or problems and they are putting strategies in place to support him. He should then be given an IEP (Individual Education Plan) which should set out specific problems, how the school intends to address and support them, set down some, achieveable targets for your ds and what the measureable outcomes would be to show the targets have been met.

4. Find out if there is an Schools Autism Inclusion service in your Local Education Authority and if there is, whether yourself or your GP can ask for them to go into school and observe him - if the school refuses to call them in.

5. Check if there is a Educational Psychologist Crisis Line. I called them in for my ds and they were the most instrumental in pushing forward his assessment and diagnosis, as well as helping him to learn some coping strategies. You could either call your Local Council/LEA or check their website to see if they have an EP crisis team, I found the phone number for ours on our LEA website.

Hang in there - I was where you are two years ago and things have improved immeasureably since then. This time last year even, ds was terrified of going back to school in September and became extremely anxious and physically ill as a result - this year he's a bit nervous, but coping well and even looking forward to it a little.

Good luck and have some very un MNetty ((hugs)) its a horrible situation to be in and I really feel for you.

mariamagdalena Tue 30-Aug-11 22:28:02

What moose said. I'd add 2 more items, carefully calculated to make you and him enough of a nuisance to be taken seriously:

6. Feel free to stop scaffolding / supporting his behaviour at school: if he takes a daft cat in and gets teased, or gets put back into his 'proper' year, he might just start melting down often enough and badly enough to give them lots of extra work. And then the school might listen to you or even stop maltreating him. Or he might be less stressed at home and easier for you to manage, which, let's face it, is actually more important.

7. Start keeping a diary, and a home-school communication book, and make regular appointments with the special needs liason person at the school, plus now and then with the head. If school suggest it's your parenting and disability at fault, then sweetly suggest they fill in the enormous and complex forms to refer to child/adolescent mental health team and social services for 'support'.

It does get better.

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