sueeltringham

Hi Kel, Welcome to the forum. We also struggled to get a diagnosis, so we really pushed and demanded/insisted. Once we had a diagnosis it really got the ball rolling with statement, help and the education system actually believing us! The diagnosis shouldn't have made a difference really, but it did. Hope you get lots of useful tips from this forum, sue

You don't say how old your son is, but my son sounded very similar at age 4 and nearly 5. Then, last year his speech came together and he's now been assessed as appropriate for age (although lower end). However he often answers with inappropriate answers or talks rubbish or ignores me. My son's diagnosed HFA. I guess it all depends on the child, situation, mood, other distractions, etc. I've found what helps in getting an appropriate response is to say his name, ask the question, wait (sometimes for a long time), if necessary repeat keeping words to a minimum. I'm still not guaranteed an answer to my question. I also need to get down on his level and gain eye contact or at least looking in my direction. I think speech is soooo complicated. Our children often don't realise they need to answer a question or they often don't hear it (because of sensory distrations). I'm not sure what you'd expect in 'moderate autism', but what you describe sounds quite normal to me with my experiences of HFA/Aspergers. Sue

Thanks for alerting me to this and the IPSEA website. I've just read with interest that IPSEA are challenging Northumberland County Councils SEN funding policies. We're in Northumberland and were told we would not get a statement for my son as he was likely to need 10 hours or less of support. However after much fighting we did get a statement (thank goodness). School has to fund the first 10 hours of support and the LEA the other 6 (and I know the school receives very little funding from the 'index of multiple deprivation' as it's in a fairly high achieving and affluent area!. It's all starting to make sense now, why the LEA were SO reluctant to go ahead with a statement. We are lucky, our headteacher is pretty understanding and supportive, but there's no accountability, and if your child is likely to need under or around 10 hours, the authority is refusing to statement (or making life very difficult). Parents are totally at the mercy of their schools and headteachers and support for children 'prestatement' can be virtually non-existant. I will watch this with interest! sue

So sorry to hear about all your son's problems with school. I cannot stress enough -you have got to be incredibly pushy. Not aggressive, but assertive and insist on a meeting asap as Clare suggests. Head of year, SEN representative, plus maybe any outside agencies (EP?). Ask that he be placed on the SEN register if not already (Probably SA+ if other agencies have been called in). Ask that an IEP be written. Document everything, take someone to that meeting with you for support and write everything you want to say down and give everyone a copy. I'm also a teacher and know too well that most teachers tend to take notice of 'those who shout the loudest'. It's an incredibly busy, stressful job with demands from everyone and most teachers will probably be quite receptive of help and suggestions. Unfortunately most teachers have no training to help them deal with children with ASD so your son is probably very misunderstood, unless the SEN person has already given advice. Hope you get something sorted soon. sue

Fans! I forgot about those! We were only allowed to go in shops that had fans! In Costco we'd always lose him and them find him on the aisle where they have a light fitting/air conditioning fan on display -mesmerised!

Hi Forbsay, Only poplar trees mind you -as they are tall and thin. Tall thin things are common obsessions, apparently! We don't have a water tank, but I'm sure if we did it would be an obsession, because it would be linked to pipes and sewers! I've just remembered that mountains, lakes and rivers are also an obsession on and off. Kind of links in with the maps. Just found Joe upstairs on Google Earth, following the M6 from ariel views. No idea how he knew it was the M6, but he was right! Where do they learn all this stuff? Sue

Church steeples, towers, masts, pylons and wires, oh, and poplar trees -all from about age 3. He knows the journey from Newcastle to Rotherham in terms of pylons! Current obsession is journeys (on trains especially), maps and Google Earth! Talking incessantly about journey's and what he's going to do in the future. There have been lots of other obsessions like toilets and pipes, but they've been done now, I think. It's strange, isn't it, as my son hates washing machines and other equipment as they cause him anxiety (the noise and unpredictability of it starting to spin?). Kind of wonder what obsession might be on it's way next? Sue

Diagnosed at 5 with HFA, but only after insisting he be assessed and refusing to accept anything else. We'd been seeing the paediatrician and specialist SLT for 2 years and looking back they KNEW he was on the spectrum. We recently discovered the SLT was an autism specialist (but weren't told any of this). We had concerns at 2 when he'd only just started walking and did not 'do' imaginative play. Speech was also odd -loads of vocab but he did not put the words together and lots of Gestalt speech. Things got worse when he entered preschool and problems were much more apparent with social communication. Looking back the HV also knew as she dismissed us by saying it was much too complicated for her to handle, so referred us to paed then refused to help in any way. Reception class was a nightmare and teaching staff were treating him like a naughty boy, refused to believe probable HFA (he's generally very passive), so we demanded a firm diagnosis. We now have a statement in place. Guess it's helped that I've worked with children on the spectrum and I'm also a teacher (secondary), so know the education system and how it works (or not).

We've used a diary system. It was extrememly useful to identify triggers and then to put strategies in place. Also useful to show to school and other agencies that everything is not OK, even though he was coping in school. What we've discovered with my ds is that he 'hates' the word NO and really can't cope with a NO answer. We find he CAN cope if we tell him 'no McDonald's tonight, but if you're good, then you can have a McDonalds' on Friday night' This strategy works really well. Definitely try to find something to channel his aggression. Make sure you see your GP and get referred to CAMHS, you should not be having to cope with this sort of aggression alone! Good luck, Sue

I think we've all done 'bad mummy' things. I refuse food fights/arguments at the table now, but I've been there -honest! One incident springs to mind when I put dried fruit on his weetabix -he screamed as if he was being murdered for hours because you can't have fruit on weetabix! Maybe your son is having teething pain? Ds would have reacted similar to yours at one time. Difficult to provide helpful suggestions, but I allow some ASD behaviours and challenge /channel others, but only if I know I'm likely to win. I try to not let him have his own way all the time and offer rewards and positive encouragement for even little steps forward. If I need to get on with cooking tea, I either let ds have his computer time, or read a book, or limited TV, OR I get him involved in the activity -he's obsessed with chopping mushrooms (not sure why but he has to buy them too) and playing with water, so there's usually something he can do. This activity might only last a few minutes, but I reward the involvement by offering a reward activity. It's a case of thinking what your son likes and building it up step by step, rewarding positive behaviours. Food tasting I find is best challenged away from the table, by trying to get him involved in cooking and buying. We have 'games' of tasting each step of the recipe and this usually goes down well. I'm afraid this sounds like I'm trying to say it's all easy and it's not, I've built some of this up over the last few years. Hope some of this helps, Sue

We went through the statementing procedure last year so I can appreciate how you're feeling. Try to take it one step at a time and don't worry too much about the code of practice (it's important as a back-up, but don't let it worry you). As part of the statementing process, the LEA and SEN panel will request reports from all the different agencies involved, including the EP (yep, ours had only met my son a couple of times too). Unfortunately you do have to write lots of negative things about your son (think of the worst days). Looking back on it all now, though, we have got our statement (16 hours and they said he didn't need any extra help), a diagnosis of HFA and ds is really enjoying and succeeding in year 1. So, what I'm saying is that there is light at the end of the tunnel and try to ignore what other parents and children get, it is SO hard to compare. Good luck, sue

We were in a similar situation last year. The school SHOULD provide the first ten hours of support for pupils on SA+. If your child is statemented then the school has to provide the first 10 hours and the LEA funds the extra above the 10 hours. I argued this with the head last year and eventually managed to get my son's support extended (a little). The trouble is, unless a child has a statement, then the 'support' does not have to be specific and there are lots of ways that a head can demonstrate that all pupils at SA and SA+ are being supported. A statement is the only way to protect the interests of the individual child. In the end, my son did receive some extra support and the school were able to show just how much better he performed with this help. This really helped support his statement. Good luck and hope you get something sorted soon, Sue

So sorry to hear of all your hassles at the allergy clinic. I think clinicians forget that living with food allergies in the real world is downright difficult! My dd has food allergies too, but not as many as your dd. We all try to do our best for our kids, but we can't be perfect all the time. Don't knock yourself, you're doing a great job! sue

Yay! Well done on being so strong and so positive, I am so pleased it is all working for you. We did a similar thing in our house, but allowed TV and computer as rewards/privelages for doing homework without fuss, or some other task without fuss (we make this clear at the time). It works really well for us and if my son slips and loses the TV, then he now doesn't make a fuss, he just goes and does something else instead! We spend a lot of time with maps, reading books, playing in the garden, using playdough and cooking/baking. However, I do find this all takes so much more effort as my son needs quite a lot of support 1:1 to maintain any form of play or activity, so sometimes I just let them go watch the TV, but only in limited amounts and only certain programmes/DVD's. Stay strong it is so much better in the long term! Sue

I wouldn't describe it as a meltdown as such, but as an anxiety attack. My son started having these at around 3. The first set of attacks happened daily for us and it took me six months to realise he was terrified of the breadmaker (I felt such a rubbish mum when I realised). He still has these attacks when things are not going well at school, he is in a new environment, or he's worried about some future event -more recently it was over a clock chiming and the washing machine spinning. Sometimes it's really difficult to work out what the trigger is. A meltdown for us is where he loses complete control of his anger, emotion, everything -like a tantrum but worse (only way I can describe it)! It usually has to take it's course and my son is not really sure what it is all about. At times he has resorted to hammering his head on the nearest hard object, but thankfully he seems to have moved on from that phase. So, I would look at what might be triggering his 'attack', and usually there are a sequence of events, top of the list for us is a change in routine, tiredness, hunger and sensory overload, along with stress and then some trigger (loud noise for us). I hope that helps -remember all of our children are sooooo different so I might be way off the mark. Sue

That's fantastic news! Well done you for standing your ground and fighting. Sue

You could try a different approach and explain to your son that this boy is feeling very sad because the others won't be friends with him and are calling him names, etc. See what he says and then suggest that you and your son could help him by being his friend. Invite him over for tea/video/games, etc and have a programme of events organised that you know they both might participate in. Hopefully, then you get the chance to work on a positive relationship. However, your son might not agree to any of this (mine would probably throw a fit at first), but it could be worth a try and might give this boy an ally. Not saying it's going to be easy, though. All of the stuff going on at school is bullying, and yes, the other boy might be contributing/not helping himself, but it's still bullying and should be dealt with by the school! Good luck, Sue

Just wanted to back up what others have said and send hugs. Although my son is probably a lot younger than yours, I do work with teenagers. I think children of all ages, ASD or not are frequently testing their boundaries, so this is what we do: Set your boundaries/rules (visual is better for us) Be consistent Reward even little steps forward with praise, treats, whatever works (again, visual works well for us, but I have to be very upbeat and positive) Sanctions should be immediate and followed through. Generally we find this works well, but if my son over steps the mark he gets one warning with warning of consequence for repetition. We don't usually have to remove privelages (eg. computer, tv), but the threat works for us. If we do remove tv/computer behaviour is worse initially, but we have longer term benefits: he knows we WILL follow through! Good luck, Sue

Does he have a statement? If so, it should/needs to be written in his statement and the school/unit should provide help with the socialising and making friends/relationships. We've had to really fight to get help for my son, but breaktimes and lunchtimes were a nightmare. He wants to play and socialise with other kids, but just doesn't know how. As part of his statement I pushed to get help at lunchtime, so now he has 1 hour a week in addition to the class time. His learning support assistant is spending time trying to get him to socialise in small groups first. I would really push at the next review meeting, preceded by lots of letters to school. Sue

It's been a hard struggle to convince school, teachers and other professionals that my son is not coping (OKish at school and coming home with anxiety and panic attacks, hiding and screaming and meltdowns). He's very passive and just opts out of activities or gives wrong answers to questions that he thinks are too easy, at school. His reception teacher told us he could only count to five. I just laughed and said he could do that when he was two!!!!! Teachers reply was 'well he won't do it for me!' One of the most annoying comments has been 'well, he doesn't cause any trouble'!!!!! This was when we were trying to convince people of his problems, both in preschool and reception. Well, no he doesn't cause any trouble, but had they tried getting him out of the book corner (where he hid every session)?!!!! We were very lucky as a specialist autistic teacher worked with him last summer and managed to convince everyone how subtle the signals and triggers are. Yay! We've just managed to get a statement, but that was a fight. Why does everyone expect an autistic child to be violent and hit out at everyone? I also get annoyed when parents of more aggressive autistic children tell me we're lucky -he doesn't hit out and fight. Well, you try entertaining, communicating with and going about day to day activities with a very passively unco-operative child who'd rather sit and read his books all day! I'm not saying the alternative of a more aggressive child is easier, but I think we all struggle in one way or an other and it's emotionally, physically and psychologically draining! Still, I love him to pieces! Sue

I've used a diary successfully, but I've used it to quote and remind myself of events for statements and in meetings. It does seem so draining writing it, but I'd say keep going and maybe keep for a short period. I've felt quite postitive looking back over a period in the diary. It's given me confidence and has also helped identiy other issues and find solutions. Sometimes it's hard to find a pattern as our children are usually not able to articulate what they mean. Good luck with everything, Sue

Pylons, wires, masts! My son can describe 150 mile journeys in terms of pylons and masts and where they all are! We're sick of them. We also have the 'going behind checkout', etc to check wires and also pipes. All new environments have to be inspected. I try to go with the flow, but if we get into a one sided conversation about pylons I've started telling him I'm bored and don't want to hear anymore about them. Then he shuts up! Maps are his latest obsession -and he's worked out where all the McD's are and pylons!!! Sue

We went through similar last year. My son's now 6 and was mostly really passive at school and mostly 'appeared' to cope well (to staff, not to us), but when he got home the anger and frustration just came out (although not much was directed at me). I've had a real struggle convincing school, ed psych and other professionals that his anxiety and behaviour at home was a direct result of school not meeting his needs. What I decided to do was to keep a diary and log everything, every meltdown, anxiety attack and anything strange behaviour wise, including refusal to do things we asked. I did this for a number of weeks and then everytime a professional made some comment such as 'he was OK at school' or 'it must be something you've changed at home', I could retaliate with a written record which couldn't be disputed. It was also a great help getting him statemented. I also realised how incredibly powerful positive reinforcement and encouragement is. My son is much more co-operative if there are rewards (preferably visual, eg star chart, stickers), so we introduced these for positive behaviour and managed to climb out of the downward spiral. Just work on one thing at a time and make each task very achievable so you are always giving praise. Hope things improve soon, Sue

Great games for toddlers that encourage interaction are ones that get their attention and are simple. Try bubbles: blow bubbles, wait for reaction, introduce simple words (eg. 'pop' every time a bubble pops), blow again, wait for their reaction and just go with the flow. Try stopping blowing the bubbles, encourage them to ask for more (may be verbal/non verbal) and respond when they ask in some way. Great fun -relax and laugh with them! You can play similar games with balls, or balloons (not if they're terrified of them). Water play and sand play or other messy play are also great for encouraging interaction (beware sensory issues). You've really got to get in there and find out what they like -maybe singing games (row row your boat). Not sure if you've seen the Hanen programme/course, but these were ideas we got from there and they worked brilliantly. We also found any simple repetitive game, like riding horsey and falling off were great too and you can get more complex and introduce language and story with this game too. Good luck and hope that helps, Sue

Yay!!! One tooth has fallen out at tea time. Lots of blood, but one very happy son who's gone to bed happily. So, it must have been the worry of the tooth actually falling out! Oh, and happy parents too! sue