Hi

[JJ's mum]

Hi, I have just been to my health visitor with a list of my concerns as I have become increasingly concerned. Since speaking with the NAS advisor I have become more convinced my son has aspergers. He has always been strange and lacked social skills and has terrible tantrums if his routine is changed. Anyway she is thinking the same as me after spending an hour going through his behaviour and obsessions etc.

He is 4 and due to start school in September and I recieved a campaign poster from the NAS which reinforced my existing fears.

It said " What do autistic children learn at school?" A is for anxious B is for bullied C is for confused. This sums up my worst nightmare and made me more convinced to home educate, not to protect him from the real world but to prepare him for it in a way he might be able to cope.

 

Does anyone know where I can get a diagnosis reasonably cheap by cheap I mean less that 1500 pounds. Obviously to do anything privately will cost. I am thinking half that maximum.

I dont want a label or a diagnosis. I want someone to sit with him and observe etc for maybe a couple of hours and give their opinion and offer me help as to how I can deal with his behaviour. I realise now I have made so many mistakes for example when Ive said " You slap your sister again and I'll........." I have actually told him to do it again. I always wondered why he seemed to fear the video ban etc but then look scared and slap her again.

 

I feel extremely guilty, he has spent most of the last 3 years with a childminder full time while Ive been at university. What is ironic is now the last thing i want is the career ive been working towards. I graduate in June so I will complete the degree and he loves the childminder but I havent noticed that he isnt interacting properly ie he is still egocentric like a 2 year old in play and emotionally though he is intelligent and his vocabulary is vast, and I mean vast. Its only in the last 6 months Ive noticed a problem, i just thought he was unique.

 

Anyway Im looking for advice in particular about where to start what I need to be doing with him, positive discipline as what works for my daughter doesnt work for my son. Ways to get him off the floor when he has a tantrum and preferably stop the tantrums as I cant see him growing out of them without help.

 

Also feedback on people who have home educated. Mostly I dont want to be waiting for years before someone will give me a straight answer as to what is wrong. Ive heard from 3 people with experience that they believe he is in the autistic spectrum and im pretty sure in my mind, but where do I go for help. Without a diagnosis the doors ive tried are closed to me, and a diagnosis will be at least 9 months so I will need to make a decision without it. The special needs at my local school is limited and I dont think he will learn in a classroom, he would learn more on a computer or in a library. He only retains information he requests, he cannot draw, no pen skills and no interest to learn, cant catch, easily upset. Hes emotionally very young and I fear he will be had for breakfast. He has a reasonable self esteem but is prone to stress and anxiety and i fear it wouldnt take much pressure before he is a very unhappy child.

 

Sorry this is a bit long and if you have got this far then thanks for reading to my ramblings.

[TheNeil]

Hi JJ's Mum - welcome to the forum.

 

I wish I could offer you some advice but I'm kind of coming to the ASD world from the opposite end of the spectrum (I'm a dx'd adult Aspie).

 

I did go down the private route though and diagnosis cost a damn sight less than �1500. The lady that I went to see was based in Preston and charged �250, dx-ing after a 2 hour session. That was for an adult though so I'm not sure whether she deals with children (I would think she would), whether the procedure is different for kids, whether her location is 'do-able' for you or whatever. If you want her details then let me know and I'll PM them to you.

 

What I did do before my dx though was to contact the NAS and ask for a list of recommended psychologists. I then contacted those that were close by and asked for a quote, rough idea of procedure and dates etc. I think I contacted four in total (including the woman I eventually went with) and not one of them was anywhere near �1500.

 

Sorry I can't offer any child-rearing advice (although I'm sure plenty of other people on the site can) but what I can say is don't blame yourself, feel guilty or anything. The fact that you do worry, feel guilty etc. proves that you care and that's the most important thing about being a parent.

[Deedee]

Hi JJ's mum I'm new here too but my son is a little older now at 8 and I've been exactly where you are now.I call my son my little 'enigma' as there's noone quite like him and as he's got older the guilt still kicks in as we realise now(sometimes!) just why he used to and still does certain things..We are learning his triggers to this day still for instance on a rare outing to a shop in a reasonably quiet high street he suddenly crouched on the floor screaming fingers in ears.The music and lights hadn't had any effect which it normally would have and some hours later he managed to tell us it was the lorry?? This being a lorry going past with the tailgate banging around 100 feet away!!

As for the school I would have a good look around and take advice from other parents?professionals then go with gut instinct.My son was really 'wild',non verbal,aggressive etc so I didn't even think he'd get that far BUT we were very fortunate with our local mainstream school even though he was undiagnosed we fell on our feet with a teacher there who had him for 3 years in a row to whom I shall always be indebted to.She took on board everything we said and worked tirelessly with M.We were refereed to have him diagnosed through the school too.He still has no interest in drawing or writing but loves computers and 'cooking' and is even starting to read!!! Unfortunately now the social and communication side is becoming too hard for him to continue in mainstream education but do look into all options available Good luck!!

[shamu]

I'll try and answer with both my hats on - as a parent who is currently going through the assessment process with my DS (aged 3) and as a professional who is involved in the "diagnostic" process.

 

We have gone down the conventional route to diagnosis. I called my Health Visitor, she referred us to the Child Development Team and we have seen around 8 different professionals over the last 3 months. Many of them have seen DS two or three times and we have a care plan meeting next week where they will give us the diagnosis (if they think there is one) and a plan for how to move forward. To me, this makes sense. He gets a diagnosis and I get all the help that I need to encorage his development. For instance we see the speech therapist every 10 days and will be seeing the occupational therapist twice a month for the forseeable future.

 

I would think that if you choose to go down the private route you would then be left without any of the support that the CDT can provide. Even if you choose to home educate your son you would benefit from the input of the therapists (they would continue to see your son at home rather than at school). The level of support they can provide is amazing - and with their input you will find things you can do to enhance his social, emotional and personal development.

 

If it were me, I'd have no hesitation in getting him seen by the "conventional" route. Our referral went in on a Monday and by Friday I had the specialist health visitor on the phone arranging an initial assessment appointment. I can't fault our team at all, and I don't believe that a private assessment in a couple of hours would have addressed all the issues that this in depth multidisciplinary assessment has done. It has been just over 3 months from initial assessment to diagnosis and during that time we've had two 10 day periods away from home and the Christmas break, so in real terms it's probably only been 2 months. I think 9 months is rather unrealistic, but I don't know what the waiting times in your health authority are like (DS did have some very worrying features that prompted an urgent referral, but with decisions regarding schooling needed your case sounds very strong).

 

Just one question, if you do go down the private route what would you do with the information? Would you be able to afford private speech therapy, psychotherapy, occupational therapy etc? I'm not suggesting that you can't go private, just wondered why you want to?

 

I've found dealing with the emotional fall out the hardest thing - I am constantly amazed at how I "missed" my own child's diagnosis and feel incredibly guilty. No matter that everyone tells me I couldn't have known sooner etc. I only want to do what is best for him at the end of the day, like every other mother.

 

Hope some of that helps and welcome to the forum

 

Shamu

[Elanor]

Hi

 

Sadly my experience was nothing like Shamu's - 20 week wait to start the process of diagnosis at a time when we were in absolute crisis.

 

We saw a child psychiatrist privately (on our health insurance - one appointment paid for at �200) - luckily for us it only took one appointment to get the diagnosis (so much for school and GPs who thought there was nothing wrong that a bit of discipline couldn't cure).

 

We then took this diagnosis (which was irrefutable given the reputation of the specialist concerned) and went back to CAMHS and used it to get a much earlier appointment, when the diagnosis was confirmed by the NHS (4 years later and we're still seeing the same excellent NHS child psychiatrist).

 

Also, I can't say that we received much in the way of help - ie the diagnosis was confirmed, we see the specialist every 6 months, and for the rest, we're pretty much on our own. From this forum, it does seem that things are geting better in terms of available support, and hopefully you'll be able to key into this - but you'll need to go through the NHS route for that.

 

So, I'd suggest that if you're faced with intolerable delays, then by all means seek a private diagnosis whilst at the same time going through the NHS route - you can do both at once!

 

Meanwhile, I suggest that you treat your son as if you already had a diagnosis of Aspergers - and really this means that you have to give him far more attention than other children, treat him as a much younger child, reduce your expectations, plan things carefully and set out routines, avoid spontanaeity, and try to think about how difficult he finds things that other kids find easy, and how helpless, confused and stressed he might be. It's a long hard process, and you need to learn about Aspergers - Tony Attwood's books are a great place to start.

 

Best of luck

 

Elanor

[JJ's mum]

I've found dealing with the emotional fall out the hardest thing - I am constantly amazed at how I "missed" my own child's diagnosis and feel incredibly guilty. No matter that everyone tells me I couldn't have known sooner etc. I only want to do what is best for him at the end of the day, like every other mother.

 

I think that is the hardest thing for me too.

The fact that I hadnt even noticed just how different he really is. I was expecting him to be eccentric, my husband also is the same.

 

The realisation that my son probably has this makes me feel incredibly guilty but at the same time relieved and in just 2 days I have made a few changes in the way I speak to him and I dont mention what Im planning to do later not even in conversation to others unless Im sure it is going to happen. This has avoided all but 1 tantrum which was caused by my daughter saying he could have a cars game he saw not realising it was for a console we dont own. So again it was due to change of plan in his mind. The realisation that I have indirectly caused most of his bad behaviour is hard because I always have made such a conscious effort to be fair in my discipline.

 

As for the private route, I do need a diagnosis by April really. But whilst this is said, I am at univerity full time until the end of May. I have missed 6 weeks out of the last 12 due to kids illness and mine. There is a limit to how many appointments I will be able to take him to. Since the univerity is 2 hours away its not practical to pop him to the appointment then back. Every little appointment will mean a day off. It sounds as though there are lengthy waiting lists for SALT and other professionals but also some of the process will be done by health vistitors such as the initial assessment which will take place probably within 3 weeks.

 

I dont think he will be priority as I dont think he is really severe. We can and do live a normal life. He is learning a lot while at home ( he is at nursery 1 morning) but he learns in a different way. He has no clue how to draw or write but can type and use a computer unaided. He is also excellent on our XBOX 360. On harder games he sometimes needs to be shown what to do, but he remembers everything extremely well.

 

Please dont get offended when I say this, but I see my son as like a Robot, he puts information in the brain and retains it well. He has to be told almost everything he knows, and asks a lot of questions. He can retain a lot of information but when a question is asked he simply picks out the piece of information most relevant. If you ask him a question such as "how does that make you feel?" he doesnt know so picks out some information about when a similar thing happened to a train and he had to be repainted. He seems to think like a computer and sounds very much like a robot when he speaks. He pauses for a few seconds while he finds the information.

 

The thing that is probably harder to take than my son, is that my husband also thinks he has it too. His brother has been diagnosed with dyspraxia but the symptoms are very similar. My husband is very similar in lots of ways to my son other than he has learnt more phrases than my son obviously. We have been seperated on and off for the whole of the 5 years. His behaviour would all make sense if he were to have this. It seemed way out of proportion but a lot of our arguments looking were started by him saying something like " you hate me, I know you hate me" Ive then replied with something sarcastic like "of course I do" his reaction then involved hospital for him on few occasion but was never pretty. It also involved the police on others and as he would never accept responsibility for his actions we have seperated. I love him but it is a very high maintenance relationship he is kind and generous and his behaviour is out of character for him especially the violence towards others.

 

Why is this harder to take? Well because I have always though he can change. He is very self centred ( not selfish) in that he doesnt consider other people. He also doesnt show he loves me and has said he doesnt know what love is. Selfish as it sounds, I can take this from my son. He planned himself to move back soonish into my home ( ive lived alone for 2 1/2 years with kids). I was upset that I didnt get a say in the matter yet again he has just told everyone he is doing it and told him I dont want him moving back before my degree finishes at least but the reality is whilst I love him and want to be with him, I dont have any desire to live with him. There are often lots of fireworks in our home when he is there. I like my peace and am happy to see him every 2 weeks. Obviously a relationship cant go on like this forever.

 

Does anyone have experience of what it is like to live with adult with this? And does it sometimes run in families. Are adults easily helped or is early intervention needed. He recognises his behaviour and whilst I thought he had it when researching for my son, he was the one who said it. He seemed like he was relieved to have an explaination but he always has to be right, and never ever ever changes an opinion. Id say it is lonely life being with him. We have been married 5 years and together 7. I am constantly looking for more from the relationship but the problem is always me, never him. Ive been accused of being mentally unstable, reported by him to social services. This has been due to him totally forgetting that events have ever happened. Not lying he really doesnt believe they happened.

 

This is a disability so I shouldnt feel so like this wont work. I can cope with my son and love him the way he is. With my husband I only ever dream of when things will change. If my son doesnt change and I end up with an 18 year old who has tantrums on the floor, I think I can deal with that.

 

This is part of the reason Id like an early diagnosis for my son. My husband doesnt want an official diagnosis he is happy thinking it is. He sees no reason why he would want to know or help to change. I would like him to at least try though I realise the help availiable to an adult will be limited. He gets on with life, holds down repetitive jobs ( struggles with common sense big time) so sees no reason why he would want to change. He doesnt see the effect it has on me or my daughter ( my son doesnt care too much). He cant accept that it hurts us even when he accepts his behaviour. He can only see the effect it has on himself.

 

I know that whatever is wrong with my son is also wrong with my husband. They are very similar in their ways. Everything is as literal and black and white with my husband too. The only difference is that hubby has at least learnt to listen to peoples opinion for a while before going right back to his point of view. My son just knows best and doesnt feel the need to hear otherwise. Neither ever change their opinion or will every admit they are wrong.

 

My son doesnt accept he hurt my daughter or cat. What he can accept is that he is wrong when it is something that is on the long list of rules written in his mind. He knows there is a rule "no hitting" but sees nothing wrong with stabbing her with a fork. Once I tell him it is a rule he doesnt do it again because he understands rules are things he cannot do. He doesnt realise the consequences of his actions.

 

And Ive just gone on again, sorry for the essay

[JJ's mum]

We saw a child psychiatrist privately (on our health insurance - one appointment paid for at �200) - luckily for us it only took one appointment to get the diagnosis (so much for school and GPs who thought there was nothing wrong that a bit of discipline couldn't cure).

 

My GP said the same he told me to set more boundaries and to never let him get his own way. My son has most of his tantrums when his routine is changed they are almost never because he wants something I or someone else has said he can have. One of the problems is my daughter who is 6 thinks she is his mum and says he can have things which arent possible. I have tried to get her to stop. He also cant handle insults even if it is just to use the colour pink in a colouring ( he is a boy, boys hate pink apparently)

 

Both my kids have boundaries. I dont think I could get much stricter without being in danger of squashing their personalities or controlling them. They need boundaries to feel secure, they need to be clear about what is expected of them.

My GP was so wrong. He has boundaries, my daughter had the same boundaries, praise for good behviour and punishment for persistant bad behaviour ( they get 3 warnings unless they are doing something dangerous)

My daughter at 4 was not having tantrums for changing bus route or walking along a different road to the same place. If my son were 3 days older he would be at school now. Thankfully he has missed the school year and will be almost a full year older than the youngest in class. He will start on or after his 5th birthday if he does go. He could not cope in school now, no way. At 4 my daughter was emotionally ready for school. Though he seems intelligent to speak to I would say he has the emotional and social development of a 2 year old, the only difference is his tantrums arent purely because he doesnt get his own way or doesnt know the boundaries.

 

This is what put me off the NHS. My doctor hadnt got a clue and the health visitor took away a list of my concerns, looked aspergers up before coming back to me( though Im thankful she at least looked it up - if it were up to my GP id be going away, punishing my son more for things he cannot help and coming back to see him in a year) My health visitor needs to run referral by the GP but they will do checks and present him with their findings. Hopefully he will take her more seriously than me. Many of the private people also work for the NHS on diagnosis etc but are quicker if you pay. The way I see it is its only money. I had saved it for a car but this seems more important.

[shamu]

Having read your follow up posts I think that the best thing you can do is persue both routes. So try and find someone who will do the initial stuff privately (hopefully for less than �500) whilst waiting for the NHS referral.

 

Can you find a more sympathetic GP? Most GPs get absolutely no training in recognition (and management) of Austistic Spectrum Disorders incl Aspergers at medical school or during GP training. Like so many people, they are quick to assume problems are down to the parenting methods. You have a very clear arguement against this - you've used the same methods on your DD and she displays none of the behaviours your son shows. It's a shame that the HV can't make a direct referral - mine is able to and did so although she told the GP. To be honest, GPs have very little input into the whole thing that I don't understand why they should be involved. As a professional I've had referrals from nursery teachers, HVs, SaLTs and GPs and the ones from GPs are usually unhelpful.....

 

If you're having a lot of difficulty getting an NHS referral then contact the NAS - they should be able to help you. Or what about talking directly to the Team Leader in your local Child Development Centre? It may be unusual but if you don't ask you don't get. Try every avenue available as you're the only one who's going to fight for your child....

 

Someone else has already mentioned Tony Attwood's books and I think they will be really useful to you. They may help you gain more insight into your partner's difficulties too. From your description, it does sound as though your partner has features of Asperger's too - it isn't uncommon for it to run in the family. Life sounds very difficult for you at the moment <'> <'> <'>

 

You sound very very caring and whilst it is difficult remember you are the best parent your DS could have. By coming here and finding out more you are doing something very important - already you've changed your behaviour towards him and are reaping the rewards. Life with children is tough as it is, life with a child with social communication difficulties is much much tougher but with time it will get easier and more and more rewarding

 

Take care and keep us updated!

Shamu

[slaphead]

We had Barry diagnosed on the NHS. His School was concerned and gave us a letter to take to our GP, who was a tremendous help. He referred us to the Bethel child and family centre in Norwich, where after 2 0r 3 visits with a psychology Nurse, we got to see the psychologist Dr Rini Hooegkamer (apologies to him for probable miss-spelling) He diagnosed Barry and was incredibly down to earth about how he had come to his conclusions, (even giving us an impromptu chemistry lesson to explain how taking omega 3 supplements would help Barry (and myself)).

All in all it took nearly a year to get to this stage, but help and advice from the professionals and from people on this , and other, forums kept us going.

I appreciate that you need a fairly speedy dx, but we are still learning about Barry's condition after 3 years, so a note of caution here, you may find out from the professionals that there is more than just Asperger's in the mix. We found out from the Bethel Centre that Barry also has ADHD, and that there may be other things which will 'come out' as he gets older, so it really is a constant learning curve!

Hope some of this helps and good luck!

 

PS for anyone who lives near Norwich and can, get a referral to the Bethel Centre from your GP, Highly recommended!

[Tally]

I contacted the NAS regarding private/NHS diagnosis.

 

They were able to give me a list of both private and NHS diagnosticians near to me.

 

They told me that private diagnosis tends to cost �300-�1000.

 

I got this information through a service on their website where you can email them for advice. They were extremely helpful.

[JJ's mum]

Thanks for all the replies. It is appreciated that people are taking the time to wish me well.

Ive been reading all day and watched this youtube video

Made me realise that really I already know what they are going to say. Im 99% sure in my mind what is wrong with Jo, the more I read and see, the more I am convinced. He does all of that, spins in circles, awkward and strange movements) He dances awkwardly, he also taught himself to use computer(watching me, im doing computing degree so you can imagine im glued and we have 4 computers in house between 3 of us) and taught himself to type though he only types family names. He may well also has a fear of cutlery, he always preferred to finger feed, and has never got idea of eating ( another thing that is way below his age). He vomits every time he is at a table with the family eating a meal properly usually when asked to eat with knife and fork. One other thing is he is a very noisy eater ( my husband is too) and eats with mouth open and stuffs loads in like a hamster. Brother in law still does this at 19. Since the 1st Jan son has vomitted over every meal except one and that was in mcDonalds so no cutlery. My son even looks like this boy and is almost same age ( sept 02).

 

You are probably right I need to treat him like he has aspergers, I already know in my mind, and if Im told otherwise Ill probably just keep asking to see someone else until I know what is wrong for sure. Its hard because the part that has denied anything is wrong still is looking for the signs that are not there. There arent many if any that I have found that are absent in my son. Im pretty sure it is not autism, he certainly doesnt have a speach delay, very much the opposite, he is above his age. Language wise he is competing with my 6 year old, in fact he uses words to big for me to use in every day speach! The reply to the question isnt always what was expected though.

 

Im a bit sad and I dont really know where to turn because the friends Ive been talking to dont really get what Im talking about.

[Karen A]

Hi JJs mum I am glad you have found the forum.I thought it might be worth sharing a bit of my experience as Ben sounds similar to your son.Ben is 8.He is very bright and is so good at ICT he helps others at school.He has the vocabulary of a 16-21 year old.I had known for many years that Ben tended to work to his own agenda.However it was only when he got a new teacher who knew about Aspeger Syndrome that anyone raised the issue with me.Ben has had numerous Assessments during the last year-SALT,OT,Psychiatrist,EP-He has a current Diagnosis of DCD[dyspraxia] and Social communication difficulties.After all of the hours spent in assessments the specialists are unable to agree that Ben has suffucient ASD traits to warrent a Dx of Asperger syndrome.He does have excellent support in school and we also have good support but not a clear Dx.

Since joining the forum I have used other's ideas.I also read widely.I use suggestions that I think may help.The great thing about so many of the ideas is that they do not do any harm.Ben's current teacher uses things like clear routine and visual timetables with all of the class because they work-for all children.So basicaly I think that whatever you decide to do about private or NHS appointments -if you try some strategies that are suggested for children with Asperger syndrome you will not do any harm.We are doing just fine even with the uncertainty of no clear Dx. Regards Karen

[JJ's mum]

Thanks for that Karen.

 

I would appreciate it if someone could enlighten me as to some of the other strategies that could help.

I have only really admitted to myself in the last 3 days that Jo has a problem that is not going to go away ( in fact its getting worse). Ive read lots on sites and ebooks about aspergers but they are mostly the facts. I think if I learnt any more of what son is going to have problems with Id be overwhelmed. Ive probably been reading for about 15 hours in 3 days.

 

One positive thing is that I feel closer to my son. Ive taken a step back and I dont see him as a child who doesnt listen or who has tantrums or is just away with fairies but as a child who is genuinely different. It hasnt been such a positive experience with my husband (who is living away at mo), I feel further from him and hopeless about the relationship. If he cant help it and there is no chance of change then I cant see us staying together in all reality. I need to give all to my son now, I dont have the energy for our relationship which has always been high maintenance and also dont like his influence on the kids and the atmosphere he brings to our house when he lives here. He is talking about returning but since I found out about son I dont seem to care about husband. At the end of the day its my job to look after my kids and a job I love but I would dearly love a man one day to look after me.

 

Im probably just being selfish.

 

Anyway if anyone knows of any strategies that can help even if they only list the terms then I can look them up.

Whats the best way to deal with obsessions? In my sons case the only time he concentrates is with the TV and computer. We arent the kind of family who are suited to this. Im pretty spontaneous and we are always out and about. How much of obsessions should you allow/use and how much should you discourage it. Also I realise that the program about the autsitic boy over Christmas was a rare case of such progress, but can animals help children learn to interact. My son adores my dog but since it was a rescue it is lead strong and too boisterous for him to get close though he seems to try hard at times. Has anyone had any experience as I have already considered another dog for when I graduate but held back as husband was planning to return to our home. I realised that I have managed without him in house for 2 1/2 years and have been pretty much a single parent for 6 years so I think its time to live for myself and the kids a bit. I feel relief at this prospect as I have been treading on eggshells for years. It came to a head when he said on phone that he needs to become more assertive in the relationship. He couldnt be more wrong, if he was any more assertive I would simply cease to exist in myself. He was down for 12 days over Christmas and when he went I felt I could live again. I was concerned yesterday after seeing the health visitor and was trying to discuss son with him but he kept going on about an argument with his friend which happened in November, I tried for an hour and couldnt get a word in edgeways. Made me realise how little we feature in his life. I yearn to have a child one day and have someone there as happy as I am that they are in this world. I feel more alone when he is there.

 

Once again Im going on, but it helps me to write down how Im feeling as I dont have anyone who understands aspergers. The only one that does (mum) lost interest in my marriage years ago and would celebrate if I ever got a divorce. Ive not loved anyone else in 10 years, the thought of starting again is scarey. I feel like I need to for my sons sake. My husband lives with his mum now and to be honest is happy there. He feels its his duty to look after his wife and kids but never ever says he wants to come back because he loves or misses us. My son shows few signs of love either so I suspect its whatever is wrong with them. I dont expect love from my son though, i dont feel threatened that he doesnt show it. I do feel threatened by husband because even if he doesnt know what love is ( his admission) , his mum is greeted with far more fondness than I could dare hope for. I get affection from son, hugs kisses etc. I just think that anyone in his life could be replaced or removed without too much trauma as long as they did his toast in triangles.

[loulou]

Hi,

 

Just wanted to welcome you to the forum <'> . I have found it a life-line in the past few years.

 

I have an 8 year old son with AS and ADHD and like you, I just thought he was a bit eccentric when he was little (just like my Dad really ). We used to call him "funny little man" because of his quirks.

 

I can see how you would want a diagnosis or assessment straight away. My son was failing terribly in manistream school at age 5, and i had trouble getting anyone to listen to me (they just said he was naughty). I paid a private Educational Psychologist to assess him and he immediately picked up on a whole list of concerns. I used his report to get the powers-that-be to listen. It still took another 9 months for a formal diagnosis, but it helped.

 

Loulou xx (rabbit from Kai!)

[Karen A]

Hi again.If you look on the resources section of the forum there are some recommendations for books.There is also a link to the NAS website that provides some good straightforward information as a starting point.Please do not feel that you suddenly need to change lots of things at once. It is a shock realising that your child may have difficulties and you need time to let it sink-even more so when you are wondering about your partner.I realised when I had been here a while that some people wait for years for a Dx.Things like referrals,Assessments and Statements take months.I do not want to be negative however it is worth thinking in terms of a marathon rather than a sprint the alternative is just too frustrating.Karen.

[JJ's mum]

Yeah you are right, Ive got a lot of feelings running round at once and so many decisions rely on other decisions being made. I have to make a decision this week on whether to apply for my PGCE. Half of me thinks I should do it even if it is just to benefit Jo, but I also need to prepare myself.

Im all hyped up after almost 3 years studying for my degree to train to teach. Other than the decisions that need to be made now I need to slow down. Ive hardly slept for trying to find out what I should be doing for him. Suppose its guilt really, He is the same boy as he was last week- sweet, loving, and full of character.

 

Maybe Im meant to teach but just not for money! I just cant see him fitting in at school. He wont learn unless its something he wants to learn about, I have tried as I also did to give him some of the skills he will need for school but he hasnt a clue yet he knows all about exo-skeletons and steam trains. The LEA forms have to be in by the 18th Jan and I dont have a clue where (if anywhere) to apply for. No schools I could apply for have special units or very got special needs, most of the TA's are just parents and spend most time assisting the teacher and not the kids. The one my daughter is at, my mum is a TA. Thats too cosy for my liking plus I dont want him being seen as an "autistic" kid, which is how the TA's speak about kids, Ive met them socially.

Edited January 7, 2007 by JJ's mum

[JsMum]

Hi JJs Mum, I am a JsMum also, my J is a Josh and he is nearly 10 and he has ADHD and suspected ASD and has many traits in Aspergers and we are awaiting an appointment for possible diagnosis also, I contacted NAS, The national Autistic Society and they gave me information on the process of Diagnosis and assessments and we are going throw the process.

 

I have also become a member of the NAS as they send you a lot of information and booklets and I have found them very useful so I recommend you look on the NAS website, and if you can, join a local apsergers parent support group you dont need a diagnosis to attend but it may provide you a lot of support and further understanding and you will defo get more tips on stratagies and routines that parents use.

 

J isnt diagosed with AS but I do use a lot of tools for children with learning disabilties and AS and many have worked more than your basic parenting books, as time out wasnt effective for J and as he was violent and aggressive I couldnt leave him.

 

J had a very very hard time at school, I would recommend you try and find out your areas Special Educational Needs Departments managers email or write a letter with your concerns about your son and how can the local LEA make sure your son is supported and understood.

 

I too was in Adult Education but I did have to quit as the meetings, appointments and having hardly no space in between challenging behaviours I was very behind in my course, I do things that can fit in around J now and even some days I get very tired it is very demanding and exhausting, but I need to do other things as well for myself or I would go mad and so I do voluntary work and a short course at uni.

 

I would write your worries to the SEN Departments Managers and key note your majar concerns, as in social skills, his writing and his obsessions, it may be that they can support your son and have a ed psychologist visit him in your home to assess him for a statement for a level of support if you did choose to send him to school or support with a home tutor.

 

There is also websites for home education and a very high proportion of children home educated have special needs and the main reason they are home educated is the parents know that the child would not cope with the school system.

 

so websites on home education may also offer you further support and getting to know why parents have home educated in the first place.

 

My son is very behind in some subjects and very advanced in others, computers is also one of them as its intstant rewards and stimulation, so they can attain a lot longer.

 

J is in a school now that understand his Suspected ASD and they make adjustments for his ADHD and he is a lot better but its been a wholistic change, all areas of his well being have been changed to adapt to his different difficulties and support his strengths as well.

 

I think from what you post have literated then its a very high chance that your partner does have AS and that its been undiagnosed, and that might be an added reason to why your son may have AS.

I think there there may be a need for a fuller assessment for your partener to so he too can recieve support in his life as well.

 

So here are a round up of suggestions,

 

local parent aspergers support groups,

look on the NAS website, and also look into joining NAS as a member

Write to your local LEAs SEN Departments Manager

look at websites and support groups in your area that home educate

look into a possible assessment for your partener

 

Tool I have used to help J.

 

visual home routine planner, one for the morning, and one for the evening with stars for each task completed.

 

relaxtion techniques, obsessions are related to anxiety, so reducing anxiety helps,

sand play, painting, drawing, ITC, Swimming, active sports, yoga.

 

play therapy, or some form of therapy to help him express and release.

 

For tantrums we have lots of distractions and reducing triggers, we also have a punch bag, for releasin.

 

For more information on triggers a brilliant book is The out of Syncs Child

 

The eating habbits your son has are exact to my son and he is 10 nearly and still doesnt use cutlery,

and J has Sensory difficulties.

 

When I read this book it was like a light and instant understanding and she does a book called Out of Syncs Child has Fun which has loads of activities to help the child with Sensory difficultes.

 

A definate book if your looking at finding some useful tools to support your son.

 

Like many here have said AS can come with a number of other difficulties so things like Dyspraxia, Dyslexia, ADHD, OCD, TS, SDD, LDs, and more as children can present different difficulties yet have similair conditions.

 

Well come to a really brilliant website and hope you feel that this is a very welcoming place to come.

 

see you soon

 

JsMum

[JJ's mum]

Thanks for the reply, my son is Joseph but I call him Jo-Jo.

 

I will certainly look into the books you have suggested. If Jo has Aspergers then Id say I know the answer to whether my husband has it. As for seeking help....no chance in his own eyes he is perfect it is everyone else with the problem. Ok so he may have a condition but it is a high maintenance relationship, very high maintenance and though realising he has aspergers would mean I must change some of the way I speak eg when he says "you hate me dont you" Ill refrain from saying "of course I do, thats why I married you" but even so, realistically Im not likely to get any understanding, no deep and meaningful conversation and certainly no acknowledgement that I hurt too.

 

If he hasnt grown out of his tantrums by his age ( late 20's) will he ever? Will social services be understanding of his issues if he has a tantrum in public?

I certainly am not going to get help with my son from him, all I get to hear is his problems which to be honest are blown out of all proportion. I dont want to tread on eggshells all my life.

 

I will probably join the NAS I certainly intend to buy some of their books tommorrow.

 

Thanks for the advice and yes I feel very welcomed on this forum, thanks everyone!

[kirstie]

Hi, and welcome!

First of all i just wanted to say that Shabu (sorry if that is wrong spelling??! memory is poor!!) is slightly unrealistic if she thinks a 9 month wait is unrealistic. Many here have been where you are now and still are and have waited much much longer, depends where you live i think.

Also your boys behaviours aren't your fault. I found that when i changed ways of speaking to my Son it made a big difference. But we can't know that untill we are told by professional people so please don't blame yourself. I think you ahve a great insight into your son and are doing a fantastic job.

I would say to try the route of private assesment if you can afford to but as others have said also the NHS route because that is where a lot of the supports will lie if and when he is diagnosed, those doors so tightly shut will begin to swing open- i promise! Don't be afraid to pester i have said it many times but he who has the biggest gob and all that, have to say thats what i did and it definatley helped

I wish you all the luck in the world and keep on posting, let us know how you are getting on. But i think your boy is a lucky little guy to have you in his corner.

Take care.

By the way, some of his behaviours sound so similar to my boy (dx AS) the pausing before answering, it's the processing of the questions asked. Make it simple, i always remember being told not to do this "Right Lewis get your coat on because it's freezing outside and you don't want to catcha cold blah blah>>>" but instead " Lewis, coat on!" will suffice, not because he doesn't have good understanding it's just too much information to process and unneccessary. Quite effective, but i'm sure you're on to it already as you seem very clued up.

Good luck. <'>

[JJ's mum]

I have tended to be quite wordy with him in my quest to be nice like the example you gave about explaining the reasons you want him to do something. I only got one boy, the other one im talking about is my husband though in many ways they both act around the same age.

I also have a 6 year old daughter who is fine, no problems with her at all.

 

My husbands brother has dispraxia but seems very similar to husband and son. Id say whatever it is they all have the same. None of them can catch, empathise, lack social skills etc.

 

I do intend to get loud as I usually do when I feel my kids arent getting what they deserve. I cant really afford private but I can find the money and may well go down that route once I have referral to the specialist and find out how long it takes. If its more than a couple of months then I will pay for a private diagnosis - want to make sure I have the best possible solution in place for when Jo starts in September.

 

What age at school do peoples kids realise they are different and/or get picked on or teased? Im thinking he will be OK for reception and yr1. Yr2 in my daughters class is when the nastiness has started towards a special needs child.

Edited January 7, 2007 by JJ's mum

[JsMum]

I personally Dont think there is a year that our children find easier or hardest but looking back I know reception was very difficult for J and many where his inability to communicate effectively, also as he was very active and needed a lot of stimulation he really didnt cope with a number of things that are expected in reception and here is a few that J had problems with/

 

unstructered times like play times and dinner he also had real problems walking in corridors when busy,

in the dinner hall he had appauling manners and was very excitable very quickly, he often was made to stand outside in the corridor, of once he escaped and went for a wonder.

 

J didnt eat his dinner due to sensory issues, noise, crowds ect...

 

J didnt like using the toilets or drinking the water from the water fountain, and he didnt drink very much in school, making him very dehydrated by the end of the day until we arranged for J to have a drink from the water dispenser that was chilled and filtered.

 

In the classroom the tables where set into groups and they had to share pencils and crayons and J never wanted to share, he would go ballistic at children if they picked up a colour he needed next, he rushed his work and he didnt partipate in writing only his name and that was a struggle though at that stage he could copy very well.

 

At story time he would do cartwheels and tipple tails, scrape chairs along the floor and annoy quiet children and cause disruption until he was removed, the teacher had many difficulties in this.

 

J was very physical when frustrated and often can hurt other children and this increased in the playground when games where not going to his rules.

 

Christmas, Easter, summer are all really difficult with change in timetable to fit in the festive celebrations and the effects are that severe they overspill into the hometime scedule as well, and evenings are challenging due to issues that havent been resolved in the day.

 

It could be a very small triggerthat causes a very big tantrum hours later.

 

J didnt react at all with supply teachers and often was so disruptive caused letters home for his appauling behaviour which where due to the teacher not understanding his special needs and J needing a familair person with him.

 

J was placed on zero tolorence behaviour programme which was mainly praise and reward but once that finished and the praise became less his behaviour returned as it was not consistant or stimulating enough any more.

 

So you see that school is a very challenging place even in year 1 and 2 and looking back J struggled very much in all areas of his development so do be aware of the challenges that this could be for your son especially if it is very likely he does have AS.

 

bulling can start at any age and foundation, year 1 and year 2 can be just as much as a struggle as year 7 in a high school.

 

JsMum

Edited January 7, 2007 by JsMum

[JJ's mum]

Thanks for the very honest reply Js mum, im not sure my Jos behaviour will cause mega disruption but Im pretty sure he wont be able to cope. He is struggling with nursery. Im seriously considering home educating him but mum is against it saying he needs the social interation. Im pretty sure he would learn fine. He isnt at school now and he interacts with kids around his age at least 4-5 times a week outside of childcare. He doesnt need the company of other kids to thrive though obviously I need to teach him the ways of the real world.

Im just not sure kids need to go through 11 years of school to learn that the world can be a cruel place.