Hi

[Jade]

Hi,

 

My son has just turned 6 and it was suggested to me this year that he could be on the autistic spectrum. After years of finding his behaviour difficult and exhausting and baffling this was like a revelation to me. The more i have looked into it the more i am convinced that he is on the spectrum. I have become more and more isolated from family and friends who find his behaviour 'too much' but who also do not accept that this could be an underlying cause. His behaviour has been such that he is no longer welcome in his stepmothers home.

 

I can honestly say that ive been 'pulling my hair out' and in tears over how to manage him, and its not as though i don't have experience of raising children as he has 2 older sisters. I thought for a long time that it was because he was a boy, with different energy? However, his behaviour makes him stand out, even from other boys.

 

He can be loving and imaginative, and can talk endlessly creating stories (which his stepfamily say is deliberately telling lies). He is extremely egocentric though, and tries to dominate and control the whole time. Just getting out the door is a major event, and once out there is the whole trauma over the activity ending. He finds change very difficult to cope with (unless its instigated by him). He is becoming incresingly physically violent to me and his older siblings which is particularly distressing for them. And then there is the constant whining and moaning, which nothing seems to assuage.

 

All i know is, since i have viewed my son from the autistic angle, things have become less stressfull and i am learing how to manage his behaviour in a more effective way. The school are taking on board his need for extra support, including paying for him to go to breakfast club which he enjoys and gives him a chance to ease into the school day, and making sure he has at least 5 minutes warning before any change of activity. I have had a CAF meeting now which recognised that he needs extra support and has recommended that he has some play therapy to try to explore his emotions.

 

I have also been to the doctor, who initially got me an appointment at the child development hospital about the wetting (5 or 6 times daily and gone from being totally dry at night to wetting every night) and was then referred to the paediatrician. The paediatrician, in a half hour meeting, told me he definately was not on the spectrum, but that he was anxious and possibly dyslexic. She has referred him to a psychologist and he is on a waiting list.

 

I understand that the paediatrician sees children with far more profound ASD symptoms, but i was astounded that she could make this 'diagnosis' in such a short time, with no background knowledge of my son and his daily behaviour difficulties.

 

Has anyone else had this kind of experience?

[smiley1590]

finding change hard to deal with unless he plans himself and decides and also getting physically violent/aggressive towards you and his siblings are indications of maybe A.S.D lurking hidden in background before making official diagnosis should look into your son's medical history/background ( how his birth was) any complications before during after does he display any hand flapping? talk obsessively about one topic/subject? struggle with eye contact? gets confused over facial expressions? everyone who has A.S.D struggles with their daily difficulties faced all seperate but similiar ways to eachother so child paedtrician should made rash quick judgement /assessment really that wasn't very professional on level!

 

my paedtrcian as child didn't WANT to accept diagnose clumsy child syndrome as known then ( dyspraxia) as ionly showed 'few signs' not enough to prove anything was 'wrong' 'out of place' i was struggling 'get by' everyday he ganged up with SENCO at juniours school they'd already made up their mind there and then after having their personal conversation /discussion my mum had made notes of her own as SCUBBU nurse who looked after us ( me and my twin bro!) when in hospital had neice with it and mum explained some signs i been showing and tasks i been struggling find difficult hard frustrating on daily basis! in the end my mum insisted pushed them to make a official diagnosis and get me statemented but was a long drawn out fight/battle for years the SENCO called my mum 'overprotective' they gave up on me my parents never once have and still fight my corner strongly today! the SENCO and paedtrician still missed the long list of signs mum wrote down looking back alot also matched up with overlapping signs of A.S ...

 

if you don't agree like my parents didn't on diagnoses keep going keep fighting never give up find answers as this main key behind everything of his life .... he may have dyslexia and anxiety issues but may also have the main prob of A.S.D that being overlooked and overshadowed and if that is the case that is wrong .... and can leave deverstation heartache etc if left for years unknown that it's there leaves 'scars' that never properly heal or go away fully follow you around everywhere you go! if not happy with answers /diagnoses given by paedtrician i get second opinion don't just go on what one says! as could have missed overlooked some important vital signs/proof of your son's life etc

 

good luck with your fight /battle for your son!

fingers crossed works out 'right' 'happy' ending way for you!

 

XKLX

[smiley1590]

trust your instinct my mum has always known 'different' about 'me' ... didn't 'add up' 'fit well' enough to explain why i reacted way i did said behaved certain way that inappropriate for situation ...sooner you find 'missing answers' better chance your son has for later on discovering working out in his own head and life .... if you feel unsettled uncomfortable about how things 'sit' with you about your son i deffo not let it drop until sorted!

[smiley1590]

with play therapy he may able act out and let out anger frustration bubbles up festers inside of him then just 'explodes' suddenly via physical violence /aggression this may help work out his own confusion of how he feels what emotions he feels in safe environment with professionals who are specially trained to deal with anger /aggression issues .... does he lose control of his anger? not know what he really doing saying when in that state ? does he get upset afterwards say sorry etc feel bad guilty he acted in such way? maybe because he feels so 'trapped' 'lost' within himself and so unhappy he displays that by 'lashing out' at anyone close near by! i know that how i was but i was much older than your son at time i was hurting inside confused lost couldn't explain into words who i was and how my life was so just spilt out everywhere such a complicated situation does he get angry over what you see as 'nothing'? or does something set him off trigger him? may seeing a pyschologist someone more trained up in A.S.D's may give more clues answers may lead down more positive successful supportive understaning route ....

[Tally]

It's disappointing the paediatrician has dismissed the possibility of ASD when you feel sure that it what your son has. However, the referral to the psychologist should hopefully highlight anything that does point to autism. I don't think all hope is lost yet

 

It sounds like you are having a very good experience with your son's school. You may need their input once he is under assessment from the psychologist, so it is very helpful that they have identified specific difficulties.

 

Even before you have a clear diagnosis, you can still do your own research and try out anything that might help with your son's behaviour difficulties. If something helps, then it doesn't really matter what the eventual diagnosis turns out to be.

[justine1]

Hi

Welcome to the forum <'> I have four boyr,two of them,Sam(7)and Dan (4) have ASD diagnosis.

 

As Tally said it seems as though school are doing what they can which is very good,the CAF is very useful.Also you dont need to wait for a diagnosis you can identify the difficulties (such as wetting)and find possible solutions for this, there is great advice on here under the various tabs.May take you time to find what you looking for but virtually every question has been asked.

 

Wish you all the best in getting the answers you need and help for your son.

[cmuir]

Hi

 

Sadly, I don't think your experience is an unusual one. My son in now 9 and diagnosed with AS, however, way back to when he was 3 I was dismissed as a stressed out first-time mum who was having difficulty coping. I struggled until I got to the point where I felt a complete and utter failure (because others had made me feel that way). I realised that I wasn't a failure and that no one was listening to me and that was the turning point for me. I arranged an appointment with my HV and GP stating I how they'd made me feel, how difficult things were, how kiddo presented (diary extracts), and how dismissive I felt they'd been and requested they extend me the courtesy of giving the situation proper consideration. They did make referrals and my son and I were passed from pillar to post. One Paed even told me R categorically did not have AS. By that point, I was certain he did and persevered. That's the best advice I can give - I'm not saying parents know best, but I am saying that usually a mother's heart and head tell her when something isn't right. Ensure that your son is seen by an ASD specialist and not a general Paed. Be warned that the diagnostic process isn't a quick one usually (unless it's very apparent that a child has an ASD) as it usually involves input/assessments from multiple professionals i.e. OT, SALTs, etc. With regards other people, sadly I can't give much advice other than tell you that kiddo is number one priority (not them) and although others' reactions are often painful to deal with, they simply don't know what it's like to walk a mile in your shoes.

 

Keep your chin up and insist on appropriate referrals.

 

Caroline.

[Jade]

Hi, thankyou so much for your replies and advice.

 

M had a normal birth & was a 'normal' happy boy until about the age of 2 when he began to be more challenging. A lot of his behaviour until fairly recently could be explained by him being so young...'typical' toddler defiant egocentric behaviour. As he is now in year 1 at school though, the difficulties and frustrations he experiences are more obvious. Basically the school has had to adapt to him because he is unable to adapt to the school, but i had to push for them to recognise this!

 

He doesn't flap or anything outwardly obvious, but he doesn't make good eye contact (unless initiated by him). He is sensitive to the feeling of certain clothes, & to bright light. He is particularly sensitive to smell, noise, and the texture and smell of food (he's basically a pasta & cheese boy). He always needs small things to fiddle with & is quite the magpie, bringing things home that don't belong to him. He gets so absorbed in things that he won't or can't hear me & i have to repeat myself a million times. He will talk endlessly on whatever topic he is into at that moment, with little regard for how it is being received (ie. he will talk to anyone & even position himself between 2 adults he doesn't know to show them some small toy or to tell them something thats going through his mind...cute from a toddler, not so cute from older children!). He is always spotting patterns in things & faces in paterns, & will do very detailed involved drawings where every little bit has meaning that he can describe. He is intelligent, & will sit up looking at factual books long after i have said goodnight. those are just a few things about him off the top of my head.

 

I have the feeling that the aggression thing is about stimulus...i think he enjoys the reaction!? For a long time he did a lot of bumping into poeple, which greatly upset his sister as it often sent her flying & she'd fall & bump her head etc. Now its the kicking out & throwing punches if you are the nearest to him. Though he does do this through frustration also...the other day i asked him several times to put a toy down to go brush his teeth, in frustration because he wasn't responding i moved the toy away rather abruptly & he headbutted me in the stomach & was totally unrepentant.

 

As you say, diagnosis isn't necessary in order to manage the behaviour, which has to be dealt with effectively to make to make life more tolerable & for the child to have understanding & security. I am finding the aggression hard to deal with though.

 

I will continue to try to find answers to whats going on with my son, diagnosis or not he has additional needs and i'm tired of him being viewed as just a naughty boy.

[smiley1590]

what you've described in your last post the clothes sensitivity and sensory issues with smell ,taste and noise all are sensory issues that are commonly are seen on autistic spectrum and also food restrictions only will eat 'same' type foods everyday and stick to that rigidly and not change food routine! also what you explain obsessions talking endlessly about obsessions about topics/subjects .... does he enjoy touch he seems to enjoy pressure of it? with autism or A.S they reckon starts to change around 2/3years old when challenging behaviour starts to show and appear and notice slight differences in 'normal' development ....

 

XKX

[smiley1590]

also notice finier details informations is autism characteristic so picking up patterns in everything too ....

[Ste]

Hi, i've no advice for you but just to let you know that i to have a 6-year old in year 1 who has very similiar traits to yours. I to have been told for the past 4-years that i'm a rubbish parent and have a naughty child. I eventually went to my GP and begged for an assessment, who referred us to Camhs after lots of assessments by various medicals they have stated they believe he has aspergers and has now been passed to a consultant.

 

i also am at a loss about what to do with the aggression and physical outbursts and feel completely dominated by him.

 

just wanted to say good luck and available if you ever just want to chat, as i completely understand how lonely and isolated you can feel and the fact that you want to help your child .

 

Ste

[Jade]

Hi, kids have gone to grandparents for a couple of days so have some headspace at last!

 

Had copy of report the paediatrician wrote to my doctor through on Christmas eve. The report was so badly written and inaccurate the paed obviously didn't even bothered to read it before sending. She completely ignored any concerns i tried to put to her, choosing instesd to quote my ex (M's dad) who said he thought his behaviour was just 'attention seeking'. Unfortunately my ex had already been verbally abusive to me just before we went into the meeting, and instead of focussing on M and addressing the concerns about his behaviour, which was the whole reason for going through this wretched process, paed chose to focus on the tension between us and interpreted this as the cause of M's anxiety. I've no doubt that the situation at his dads home contributes to his anxiety, but i don't believe its the cause of beaviour, which goes way beyond 'attention seeking'.

 

Paed has referred M to Clinical Psychologist and he is now on the waiting list. That meeting with Paed and her subsequent report has left me feeling angry and upset though, like i havn't been taken seriously at all. And completely undermined by my ex, who effectively sabotaged the meeting by trivialising behaviour that lead to his wife banning our son from their home.

 

Am going to see my doctor to go through the report and highlight how bad it is. Think I should request a different Paediatrician, and not invite M's dad to further meetings! what do you think?

 

Thanks Ste and everyone, have felt very isolated with this for a long time, its so good to know there are others to connect with to share the experience.

Edited December 28, 2010 by Jade

[justine1]

Hi, kids have gone to grandparents for a couple of days so have some headspace at last!

 

Had copy of report the paediatrician wrote to my doctor through on Christmas eve. The report was so badly written and inaccurate the paed obviously didn't even bothered to read it before sending. She completely ignored any concerns i tried to put to her, choosing instesd to quote my ex (M's dad) who said he thought his behaviour was just 'attention seeking'. Unfortunately my ex had already been verbally abusive to me just before we went into the meeting, and instead of focussing on M and addressing the concerns about his behaviour, which was the whole reason for going through this wretched process, paed chose to focus on the tension between us and interpreted this as the cause of M's anxiety. I've no doubt that the situation at his dads home contributes to his anxiety, but i don't believe its the cause of beaviour, which goes way beyond 'attention seeking'.

 

Paed has referred M to Clinical Psychologist and he is now on the waiting list. That meeting with Paed and her subsequent report has left me feeling angry and upset though, like i havn't been taken seriously at all. And completely undermined by my ex, who effectively sabotaged the meeting by trivialising behaviour that lead to his wife banning our son from their home.

 

Am going to see my doctor to go through the report and highlight how bad it is. Think I should request a different Paediatrician, and not invite M's dad to further meetings! what do you think?

 

Thanks Ste and everyone, have felt very isolated with this for a long time, its so good to know there are others to connect with to share the experience.

Hi

 

My ex won't accept the diagnosis of both boys,well with Sam(7) I did'nt even tell him about his diagnosis until he had been excluded the second time from school(it was about 3 mths after) so he never went to the appointment. Part of the reason I left my husband was because he did'nt want me to see a doctor when I had my concerns about Sam.

When he did find out I told him I had to take him because the school were concerned,which was true,he said it was because I left him that Sam behaves the way he does.

 

Well the paed we saw knew the history,and Sam still got his diagnosis. My other son Dan (4) actually lives with my ex now, and although he to has a dx I never told my ex and don't know if I ever will it all depends on whether Dan needs any help,I do speak to the school and work with them.

 

If you were married he has parental responsibilty so if you go to an appt without him and he finds out he could dispute this, but its very unlikely. I am sure when your child is ill and you take him to the GP you don't need your ex there,so it should be the same in this situation. If a dx is given you can then show him and he can decide what to do after that. If you were'nt married and he has no parental responsibilty from the courts then you are free to go without him.