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Here are some suggested organisations that offer expert advice on special needs.

Yesterday I was told that our DS is somewhere along the........

22 replies

busybusybee · 23/02/2006 19:58

autistic spectrum

Such a shock - although it confirmed my worries. It was still a huge shock to be told!

I took him for a first appointment at the hospital and the doctor seemed to know almost as soon as we walked in the room!

I would appreciate any advice, helpful tips etc as ATM I swimming in the dark really

Thanks all!

OP posts:
spursmum · 23/02/2006 20:07

Im afraid that I am of absolutely no use at all. Im still trying to figure things out and my ds has had a dx since july!!
Ill help if I can but you'd be better off with Jimjams, Davros, Peachyclair and a few others.
They are my source of all things ASD related!!

onlyjoking9329 · 23/02/2006 20:12

how old is your son? what led to you having concerns? is your son verbal? what areas do you have difficulties with? sorry for all the questions

busybusybee · 23/02/2006 20:27

Please question all you like - I wasnt specific in the origonal post

DS is 4 1/2 and definately verbal! He could say 100 words at 18 months and 300 by 24 months. He comes across as quite intelligent in many ways.

THe doctor however was very quick to pick up on the fact that he speaks in a monotone (something i had never noticed). He doesnt use facial expressions well. He finds showing empathy difficult. He doesnt make eye contact easily. He runs backwards and forwards indoors for up to an hour on a regular basis. He gets very upset in things dont happen as he is expecting them too.

OP posts:
busybusybee · 23/02/2006 20:33

Can anyone reccomend any helpful books I could read? websites? support groups etc?

OP posts:
Saker · 23/02/2006 20:55

Hi Busybusybee

Sorry you have had a big shock. Whatever your fears it is still horrible to have it confirmed. I can recommend the National Autistic Society website as a starting point. I'm sure others will be along with other suggestions.

Did the doctor say that he/she would refer your ds for speech and language therapy or any other help? Is your son at school yet?

onlyjoking9329 · 23/02/2006 21:04

He sounds quite able compared to my three, does he have any obsessions? problems with food, sleep.is he still at nursery ? what if any support does he get at nursery? i am not sure what book would be best as my kids are very different thou i have heard tony attwoods book is good, social stories may be good for some stuff if your son is rule bound.

busybusybee · 23/02/2006 21:10

Thankyou for the replies

Yes OJ he is able in many ways - most people wouldnt notice a problem - hence my shock i guess cos although I think the diagnoses is right i still cant get used to it.

He doesnt really have any problems with food - although recently he is not too keen on food that isnt cold - a fad i ignore!

He isnt really obsessed about things either - has his favourites of course but i wouldnt call it an obsession

He has only just started at school so I dont really know what problems may arise there yet. Im not even sure he will be entitled to any support in school.

OP posts:
onlyjoking9329 · 23/02/2006 21:17

he may get some help at school social skills, understanding others, making friends, there are some good books on ebay at the moment if you do a search on autism, i saw one about making friends and outside games, playtime can be difficult for kids with ASD the whole sensory thing and the social stuff too, my DS had support to help him play some structured games at playtime otherwise he would just run up and down as he wasn't sure what else to do.

sphil · 23/02/2006 21:24

As SpursMum said, there are other people on here who are absolute mines of information and I'm sure they'll be along soon. My son was only dx three weeks ago (after a year of us suspecting) so I'm relatively new to all this and still in the process of finding out for myself. The single most useful source of information for me has been this website! There really is nothing like the experience of other parents, especially with something as wide ranging as autism. I always knew that the spectrum was huge, but it's only since coming on here that I've realised just how different and individual each child with ASD is. My son is younger than yours (3.5) and only just becoming verbal so we are in very different positions.

Nevertheless, I'll tell you what we've found most helpful so far:
National Autistic Society. Their website is hugely informative and you can ring a helpline too. There are local branches you can join and meet with other parents. The website has hundreds of links so you can research almost every aspect of ASD and many interventions and therapies.

BIBIC (British Institute For Brain Injured Children) in Somerset. They would do a holistic assessment of your son and give you an individual programme designed to help him achieve his potential (this might include sensory exercises, activities to promote learning, activities to improve fine and gross motor skills, to manage behaviour etc.) You have to pay for this, but there is funding available. The first step is a telephone interview which is free and doesn't tie you to anything - they take a detailed history for about an hour and then tell you the sorts of things they'd be able to offer. You then decide whether to carry on. It's definitely helped my son to make progress, but don't know how useful it would be for an older, more able child. If he has sensory difficulties then I would say give it a try.

Although my son is doing well on the BIBIC programme we are looking at other methods of helping him as well - and again, this site is brilliant if you want views and advice on different methods of intervention.

Will do another post with links to the above - can't remember web addresses off top of my head!

I think the feeling of confusion and 'swimming in the dark' is the one I found most difficult when we first suspected our son had ASD. At the beginning it's easy to be swamped with so much info that you can't take it all in. It does get better- I'm no expert, but I feel hugely more well informed than I did six months ago and more in control as a result. The mums on the SN board are a very supportive bunch and really take time to answer the most basic of questions. So you've found the right place!

sphil · 23/02/2006 21:26

www.nas.org.uk

www.bibic.org.uk

Sorry - not 'proper' links I know!

emmalou78 · 23/02/2006 21:41

Hi.

I can recomend Lorna wings 'the autistic spectrum' Its enlightening but very easy to read it also covers the multifarious ways the triad of impairments can manifest.

My son is a year younger then yours, and was dx last july, I personally felt liek a weight had ben lifted when they finally confirmed it, I knew when he was about 13 months old but no GP or HV would listen.Though I do understand what a blow it is, the confirmation that your child is diffferent and the list of things tehy may never do.. it gets you sometimes, I usualy find its the wee small dark hours...

from what you've said, I would speculate your son is at the higher functioning end, possibly aspergers.

With a dx you will be able to access more services, help at school, support for him AND your family.

My sons at the lower - middle range of the spectrum, so I can't relate him to your ds...

take care

emma x

getbakainyourjimjams · 23/02/2006 21:50

He sounds pretty high functioning (AS?) Might be worth reading Tony Atwood's book on AS and Mike????? help me out someone -Coppertop? the book on high functioning autism by Mike????

They'll probably be more useful than ones dealing with the other end of the spectrum. Don't let his abilities stop you applying for a statement etc if you think he is going to need help dealing with the classroom. I know 3 high functioning children locally (with AS) who all have a lot of support specified in the statement (0.8, 0.8 and 1.0 I think).

onlyjoking9329 · 23/02/2006 22:55

mike stanton is the name you were after

tobysmumkent · 23/02/2006 23:00

Message withdrawn

joe35 · 23/02/2006 23:05

How did it come about that you son was assessed?

getbakainyourjimjams · 24/02/2006 08:23

Staton! I always forget his surname! Anyway a great book to start with for the higher functioning end of the spectrum

Blandmum · 24/02/2006 09:11

Start getting the school involved with your son's special needs asap. the earlier he gets help the better. get as much help as you possibly can.....even if it seems 'more' than he needs.

As the experts on this board will tell you statementing is a long and difficult road, the sooner you start the better.

MeerkatsUnite · 24/02/2006 09:25

busybusybee,

With regards to statementing and the process there is nothing to stop you as a parent applying now to the LEA in order to have your son assessed. I would not leave this to school and wait for them, it needs to come from you. Also as a parent you can appeal if the LEA say no to assessment. If the LEA agree then a statement will be issued. A Statement is a legally binding document reviewed yearly outlining the child's difficulties and support to help with these.

As your DS is 4 1/2 and will presumably start school full time at 5, then I would put a request into the LEA asap. It can take six months for a statement to be issued, statementing is not a short process by any means.

IPSEA are very good when it comes to dealing with the minefield that statementing can bring and they have model letters you can use:-

www.ipsea.org.uk

3mum · 24/02/2006 09:53

Hi Busybusybee. Sorry about the shock. I remember it well even though, like you, I probably knew really. I remember that overwhelming feeling of isolation too. It does get better I promise.

My son is now 8 but was first diagnosed at about the same age as yours. He has a dual diagnosis of aspergers and ADHD. He attends a mainstream school and is doing pretty well.

I second the views of those who have said every child is different. I know some children with HFA who deal with school perfectly well and have no additional support at all beyond a fairly understanding teacher. My son wasn't one of those and has a full statement and 1:1 help which has made a world of difference.

I think schools vary a lot in what they offer too. My son's large inner city primary has excellent SEN support and runs social groups and speech and language groups from which he has really benefited. I know from reading other posts that some schools seem to offer nothing. I'd certainly suggest talking to the school and seeing what they have to offer.

Either you or the school can apply for a statement. One word of caution is that IME you need to plan ahead and put in place plenty of supporting paperwork to make sure you get the result you want from a statement application(and you need to have worked out what you want before you start).

I (and lots of other people on here) have plenty of track record in this and other sources of help. If you want to CAT me I'm happy to exchange emails or chat on the phone.

coppertop · 24/02/2006 10:01

Hi Busybusybee.

Your ds sounds fairly similar to my ds2 (3yrs). The running up and down over and over again sounds very familiar too. One thing that I've found helps is getting a small trampoline. When ds2 is racing backwards and forwards he can often be re-directed to the trampoline and bounce on there instead. It calms him down much faster too.

I agree that it's best to get support for/from school asap. Could you arrange a meeting with the teacher and SENCO to discuss any problem areas that they may have noticed? From this they should be able to draw up an IEP for him (a plan with a couple of short targets for ds and an action plan of how to achieve them). Problem areas will vary from one child to another but the more common ones seem to be: sitting for carpet-time and assemblies, playtimes, lunchtime, toileting, noise from other children, unexpected change to routine.

When my ds1 (5.5yrs old and also autistic) started school his teacher used a visual timetable for him so that he always knew what was going to happen. It cut out a lot of the problems usually caused when the usual routine was changed. You can also use a visual timetable at home. They've made a huge difference to ds1 and ds2. (You can find out loads more about visual timetables in the mumsnet archives).

When you feel ready for it you could also look at the financial side of things. You should be entitled to claim DLA (Disability Living Allowance) for your ds. The forms are horrible but you will get lots of help on here about the best way to fill them in. DLA usually entitles you to increase in Tax Credits too if you get those. There is also a Carer's Allowance which I don't know much about but others on here do.

busybusybee · 24/02/2006 22:17

Wow thanks for all those wonderful replies - Im still swimming in the dark. I had no idea about possible extra financial benefits etc.

Im guessing that statementing might be a good idea for him. He is entitled to be at school full time now (even though he isnt five until sept) because we live in wales where full time school starts at 4. Ds started in January and only goes in three days - much to the teachers annoyance but i think i have persauded her if he was there 5 days she would soon prefer 3.

Ds is often a delightful and wonderful boy, but he is also very difficult - something that seems to be getting worse. I feel so paranoid, as if it must be me that is a bad mother, not giving him enough quality attention or something. c

Coppertop - I like the trampoline idea!!! Do you mean the type that can also be used for exercising mummies, or a special kiddies one? I ask because i have seen the round adult exercising ones in Tescos for less than £20 - tempting!

OP posts:
sphil · 24/02/2006 22:27

We got ours in Argos - a small round exercise one with folding legs - for £17.99 I think. It's suitable for adults and kids.

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