Recent diagnosis

[lisa2701]

Hi everyone,

 

I'm a mother of a 4 year old boy who has just been diagnosed with autism a week ago (although we've suspected for a while now). I must say that my head is still in a bit of a spin with it all. Almost feel as though i was given diagnosis, a pack with leaflets and shown the door so i'm so glad that i found this forum. Wonder if anyone could recommend some good books to read up on, i've already read "ten things an autistic child would want you to know", thought it was really good, but would like to read up some more.

 

Thanks lisa xx

[bid]

Welcome to the forum, Lisa

 

It's a funny old time around diagnosis, so be gentle with yourselves <'>

 

Tony Attwood is always a good starting point for reading about autism and Aspergers.

 

Bid

[lisa2701]

Thank you for such a quick reply bid. I will be sure to look for some books by Tony Attwood, and i'm sure i can find lots of information on here. Thanks xxx

[bid]

Thank you for such a quick reply bid. I will be sure to look for some books by Tony Attwood, and i'm sure i can find lots of information on here. Thanks xxx

 

Should have said you can find all his books on Amazon

 

E.g: http://www.amazon.co.uk/Complete-Guide-Asp...6696&sr=1-1

 

Bid

 

[julie1]

with your son being just 4 years old you must still be in contact with your health vistor. the HV may be able to tell you about local support groups. We have a good one where we live and they have an amzing libary, with books and dvds. I hope you will be able to acess some support at this time,this site is a great source of kindness and information, but sometimes its nice to speak face to face with others in the same situation as yourself. Give yourself some time and grab as much support from family and friends as you can. Try to enjoy the holidays and hopefully we will all get some much needed sunshine.

[NickyB]

Hi everyone,

 

I'm a mother of a 4 year old boy who has just been diagnosed with autism a week ago (although we've suspected for a while now). I must say that my head is still in a bit of a spin with it all. Almost feel as though i was given diagnosis, a pack with leaflets and shown the door so i'm so glad that i found this forum. Wonder if anyone could recommend some good books to read up on, i've already read "ten things an autistic child would want you to know", thought it was really good, but would like to read up some more.

 

Thanks lisa xx

 

Hello lisa and welcome

 

Your post took me back to when my son was diagnosed when he was 4. We knew exactly what the consultant was going to say, but it still felt like a huge shock. She was very matter-of-fact about it and just sent us on our way with a few leaflets - not very helpful It is a very strange time, and you need to give yourself time to take it in.

 

Take care <'>

[Sally44]

I too got an A4 leaflet when my son was diagnosed at 6.5 years. Somehow that didn't really cover it

My advice would be to seek information as you need it. There is so many books out there, and every child is different. For example I don't really have any behavioural issues with my son - so I don't go down that route. He does have lots of sensory issues - so I have followed that one up. If your son also has sensory issues I can recommend any of the books by Olga Bogdashina. She also does alot of seminars through the NAS local support groups so if you see her name, and it is relevant to your child, then I would recommend you try to see her.

Also get in touch with the National Autistic Society. They run Help 1 and 2 programmes for parents of newly diagnosed children. They also run day seminars about the Special Educational Needs process which is very useful.

As your child has a diagnosis of autism, what do you feel you are aiming towards for regarding educational environment for starting school? If you feel he will need a Special Educational Needs placement then you will need a Statement to get that kind of provision.

 

[lisa2701]

Hi again,

 

thanks to everyone who has replied. I have considered contacting my health visitor but wasn't too sure how she would be able to help. I will definately contact her on monday and see what she can offer. I must say that the consultnat the we saw was lovely both with my son and with myself, i just felt like she'd maybe ran out of time at the end and wasn't able to spend anytime talking about things. Going back in six months to see her so will no doubt have lots of questions by then, but its a long time to feel alone and unsure of what your doing.

I must say that my son doesn't have too many sensory issues and the ones he does have are managable. He is sensitive to noise but not to an extreme manner, as long as you turn down whatever is bothering him he settles down instantly. The hardest one for me is that he doesn't like the shower (says that the water is scratching him) but i only have a shower in my house, so that is a problem and one that is getting worse. He is also very senitive to hot or warm. A temperature that i think is perfect for him he thinks is scalding so he has pretty much cold showers. Getting washed in the morning is the same. ANd his dinner can only be warm and no more, if he tries it and its too hot (in his mind) then he just simply won't look at it again. He does have a liking to things like tights and silk, but i don't think of that as i problem really.

 

Behaviour is where i am struggling a bit with him, He is very easily frustrated and angered, and reacts by hitting, punching kicking, punching and shouting. He also refuses to do things that he is capable of, i.e. getting dressed, but the more you push it or try to convince him the more he'll dig his heels in and refuse. ANd i must say that since the school holidays split a few weeks ago both these have gotten much worse. Its so exhausting and i don't know how i'll cope with another 5 weeks without a break. My husband works full time, very often away before my son gets up and not home till he's in bed, and both grandparents have stopped taking sean over night in the last 18 moths or so. I'm only 24 and all of my friends are younger and have no kids so i don't get any support there either.

My son starts school next month, into a mainstream school. I must admit i am very worried about how he is going to cope and would like to at very least consider and look into a special education school. There is a good one a few miles away from me. I have no idea how i would even go about that. I was under the illusion that you only needed a statement if you lived in england or wales? is this true as i come from scotland? And if it is does anyone know how things work in scotland?

 

Sorry about the length, just trying to cover all basis.

 

Lisa xx

[thomastank]

 

 

Hi Lisa, Welcome. My son was diagnosed last year when he was 4. I struggle with his behaviour too but he has made huge improvements this year. Have you been told about any strategies to help your son such as visual timetables and giving him more warning when changing activities etc./help on identifying what triggers the behaviour? Holiday's are often harder due to lack of structure.

 

I don't know if it applies in Scotland but ask your health visitor if Portage is available in your area, it is a pre-school service where someone will come to your home and give you advice, it would be worth it even if you only had one or two sessions before your son started school.

 

I too was very worried about my son starting school, it turns out that his school is fantastic and his teacher has made it her mission to attend every possible course on Autism to help my son. I hope you are as lucky as I have been.

 

Good luck, life does (in my experience) get better with time but its a lot to take in at first.

 

 

 

[lisa2701]

Hi thomastank,

 

I have been told to get a visual timetable, something that i am in the process of making and hoping to get put together tonight if not this weekend. I have also been told to get a visual timer for him, still working on that one as i'm not sure what type of timer would suit best. initially though a sand timer would be best but then there so specific to time, i'd have to buy several of them. So now trying to find one where i can set time to my liking. Not sure if a simple count down kitchen timer would do? He is fabulous with numbers sou would no doubt be able to comprehend that the numbers are ticking down. As for help identifying his triggers i have had no help.

 

As for school i am sure i will just have to wait and see what happens. i will ask my health visit about portage. I know that i am suppoed to be put in contact with a disability nurse whio comes out to the house to give advice etc, but so far not heard anything about it.

 

xx

[Sally44]

Something to consider about his behaviour. You say he has some sensory issues, well some of his behaviour might be as a result of his sensory perception. For example my son got into troube in his previous school because after PE he would refuse to get changed and put his shoes on. This got to the stage where he was throwing things as the TA who was trying to encourage him to get changed.

It turned out that when he got changed for PE he pulled off his socks/shoes. When he had to get changed back into his uniform it felt strange and stratching to him. Also his socks had stretched from being pulled off and he couldn't get them to 'feel right' because the seams were in the wrong place and therefore he refused to put his shoes on. etc etc.

It is hard to explain to anyone who does not have sensory issues. I do have some myself although I am not autistic. For example clothes tags are a nightmare for me. If I put on an item of clothing and have not cut out the tag then to begin with, for the first minute or so, the tag just feels uncomfortable. Then it becomes painful and feels like a needle is being stuck into me. I have been known to rip out tags with my bare teeth in the street because they were causing me so much pain. As a child my mum used to make her childrens clothes. She made me a lovely dress. However it had lace on it and I could not bear it. She tried to get me to wear it for a party and I refused (because it hurt me). She gave me the ultimatum of either wear the dress or don't go to the party. I chose not to go to the party - not because I didn't want to go, because I did - but I could not bear to feel the lace against my skin because it would have hurt me.

[A and A]

Hi everyone,

 

I'm a mother of a 4 year old boy who has just been diagnosed with autism a week ago (although we've suspected for a while now). I must say that my head is still in a bit of a spin with it all. Almost feel as though i was given diagnosis, a pack with leaflets and shown the door so i'm so glad that i found this forum. Wonder if anyone could recommend some good books to read up on, i've already read "ten things an autistic child would want you to know", thought it was really good, but would like to read up some more.

 

Thanks lisa xx

Hi there Lisa the books we have found a help are The Autism Spectrum by Lorna Wing and Not Stupid which is written Anna Kennedy by a mother with two autistic children and her fight to give the children the quality of life they deserve. I was reading your message above and wanted to ask you some questions we have a 2 yr 8 month old son who is having assessments by the multi discpilnary team at the child development centre, so far he has had his hearing tested and thats fine, he has seen a consultant paediatrician once who has requested blood tests for fragile X which have been taken a week ago, he also wants Liam to have a muscle test and possible MRI later, he wants to see Liam again in 3 months time, we are waiting to hear on portage which was refused but the doctor and speech and language therapist (who he sees for an hour each week as Liam doesn't speak at all) have done a re referral as they feel he needs portage at home, we are also waiting to hear from a educational pyschologist about getting Liam a place at a special needs nursery, what age did you feel you needed help as you had concerns on your son and what age did the assessments start and how long did it take to get a diagnosis. Sorry its a lot to read, it our heads we know he has autism as the doctors have agrreed that the signs are all there, I just dread the day when they say what the diagnosis even thoughwe are expecting its gonna hit us very hard, how have you coped since your son was diagnosed.

 

Anna from A and A

[lisa2701]

hi again,

 

Firstly i'd like to apologise for disapearing for a couple of days, had to take a time out and clear my head.

 

As for sensory issues, i would agree that some of his behaviour is steming from sensory issues. Mainly surrounding, temperatures of food and water, and noise bothers him too. The showers a hard one as he says the shower scrathes him, and that is too hot, but its as gentil as i can get it and the showers freezing! i find this hard as i feel like i'm being cruel showering my son in a cold shower. I think in light of things i am going to try to get a bath put in with a shower over it, would make life much easier on both of us if he didn't get so stressed at shower time. Admittedly i am very new to autism, and i'm learning as much as i possibly can to help my son but i just wish i could understand better and quicker. We have got a visual timetable set up now which he has responded to very well. Behaviour seems a little better in the last two days but then we haven't left house, so are able to control most things in the enviroment. he got very angry with our cat yesterday and so i asked him what it was that was making him angry, and he told me that she kept going in and out and in and out of the house and it was stressing him. Poor wee soul, the cat had spent all morning coming and going from the livingroom window and he was really upset by it, so window got closed. Seemed to help.

 

A and A, I first noticed that my sons speech regressed around the age of 18 months - 2 years. He started a small playgroup around that time and i was assured by them that he was just developing slowly, although they all commented on his american accent, which they loved. He started nursery around 3 and again i questioned his speech, in which they agreed that it had to be adressed. So he started seeing a speech and language therapist and made little progress. My hv referred my to the CDC as she suspected autism, but no one had told us anything at this point and i hadn't a clue about autism, therefore didn't know what to watch for. The CDC eventually saw us, asked to have some blood work done and sent us on our way. We then get the report in and it mentions that they don't think he's autistic. i then went and read up on autism out of curiousity and couldn't believe how much it sounded like my son. So i called the CDC back and told them about my thoughts (although felt i was being silly). 9 MONTHS later i get another appointment with CDC and at this point had lots of example of autistic traits in my son, so she referred me to the specialist. At the assesment there was no hesitation in diagnosis, and i was told for the first time that my son has a speech disorder, not just a delay. My son is 5 in October and he was 2 when i noticed his speech wasn't developing, so it has taken almost 3 years. Had i known then what i know now about autism i think we might have gotten things done a bit quicker, i wasn't aware of his hand flapping(that was normal to me, he'd always done that, i never even noticed him doing it), sensory problems(i just thought the nightly fights in the shower was naughtiness ), social problems(played on his own with thomas tracks for hours, wouldn't let anyone else touch them, and lined them up), etc. AS for how i'm coping with the diagnosis, the answer is, no where near as well as i expected i would. It is hard times right now. Normally i am a very open person with my family, but for some reason i can't bring myself to tell my family how sad i feel. I also feel increadably guilty for all the times i've gotten angry with him over things that i now know he couldn't help.

 

i hope that helped A and A, if you've aymore questions just ask, i'm sure i've missed something out as its late.

 

Lisa xxx

[smiley1590]

guilt amd anger are 'normal' reactions and emotions when dealing with newly diagnosed child feels like everything being turned upside down from what you had many parents with ASD child/ren feel this way too going through this process is like 'grieving' the acceptance of this disorder and what comes with it! must be shock to system and takes ages to settle down and properly get used to how ro cope with it improve it get things balanced better! i think my mum felt guilty for shouting at me for the things i couldn't control and didn't know why! you need personal time out 'to breathe' and clear your onw mind and thoughts i would chase up help and support as sounds like you could both do with it right now! it hard thing to get used being around! you may feel many different emotions,thoughts and feelings which must be scary but your son still same autism or not! i'd read up on books on parents with ASD child and sensory issues they may give you ideas,tips and advice of what may help him best! trial and error really with every ASD child! you probably feeling stressed ,worried is there not a local parent ASD support group you can join up with as this may help share stuff out so you don't keep it all within you!

 

good luck with everything!

take care

XKLX

[mariag]

Hi Lisa

 

I have 3 kids, 2 who have ASD and 1 who is waiting to probably be diagnosed AS So i completley understand what you are saying about the diagnosis being hard, my first child was diagnosed when he was 5 he is my youngest and has more issues with behaviour than my others and this was just a year and a half ago, and since then having learn't what autism really is we were able to see that our other children had the same issues. My husband is also waiting to be diagnosed.

 

So for a long time now we have had to be constantly in this grief stage trying to cope with the realisation that our kids will struggle with life in general, but it will get better as my husband is only too well aware of, he copes fine, he is brilliant in fact so i know that our children will be ok if we help them with thier personal issues. Your son sounds similar to my daughter she has quite major sensory issues. I was thinking maybe you could try getting a bowl and put it in the shower to wash you son because if the water coming out the shower is hurting him then maybe a more dry wash will help, do you use soap or a shower gel, he may like a shower gel as it's softer on the skin or he may hate it, it's all trial and error, a lot of errors. It really does take time to understand your children, which is why reading will really help you. Don't over do it though, as this is really a hard time for you

 

We have read lots of books and i must say the best one was called a real boy, it's a fathers story of his son and what life really feels like raising a child with autism, i could relate to many thing he wrote, i think i like this as i was tired reading about theory and wanted something more real and believe me this is very real. I have more recently brought a film called black balloon this also is very real. Both will make you cry as you will feel the pain for you own child, so just to warn you It does help to cry as it will help you through this grief stage, then you can start to have other emotions that will help you fight for the things that you son really needs, because you will be his advocate. One more book i just love is Autism Spectrum Disorders The comlpete guide written by Chantal Sicile Kira.

She has a few pages that talk about the grief cycle and explains in detail how you will feel at each stage, this was all i chose to read as it helped me through that really bad stage, it was just what i needed at the time. Only read what you need at the time.

 

Don't beat yourself up either we have all done things before and after a diagnosis that we wish we hadn't done, it's not possible to be that much in control of our emotions, we will have a few days or weeks even when we feel it's all too much, but you will come back strong and ready to fight again.

 

Hope things improve soon! <'>

maria x

 

 

 

 

 

 

[mariag]

Hi again

 

I failed to say you can get the books from Amazon, and i just had another thought, does your shower hose come off the wall? If you had it closer to his body it may feel softer, also if he likes having a dry wash with the bowl and face cloth/sponge. He may let you rinse him down that way too, just to get the soap off or you could turn the shower into a game, tell him that you you bet he can't stay under the shower for 5 seconds and count and see his delight when he can do it then bet him to do 10 seconds, however long you think you need to get him rinsed. Maybe not all at one time increase over time/days and his tolerance level should rise. My youngest hates having his hair cut, i do it myself, when he was very young i had to hold him down with lots of screaming now he thinks it's a game and we put the kitchen timer on and see how fast i can cut his hair he sometimes gives me 2 minutes and his hair is half done then he looks in the mirror and laughs and he agrees i can cut some more, and so it goes till i finish. I don't take longer than 5 minutes otherwise he would not cope, he hates the noise and the feel of the cutters, but we have made it a game so he wil do it on his terms though still. He only agrees to have a hair cut after weeks of persuasion

Maria x

[lisa2701]

Thanks again for your replies.

 

i am not entirely sure about asd specific support groups in my area. I really should sit down and make a few phone calls, i just can't get half an hour without my son to do it in silence, and i struggle to focus on things (i.e conversations) when there is noise in the background. But i think i will go after i write this and see if i can get hold of my health visitor. See what she can suggest.

I have made some trips to borders books to see what they had for reading, i did buy one book but haven't had a minute to sit down and really get into it.

As with the shower situation, my shower does come off the wall, and we do take it down and let our son have complete control over it, but unfortunately there are days where he just refuses to rinse the soap off him. We use childrens shower gell. He doesn't like being wshed with a facecloth or sponge as this is how we get washed in the morning and he hates it! But maybe i could try a bowl of water and a cup that he can rinse himself off that way. he likes doing that in the bath when we are at my mothers.

Haircuts are also a nightmare for us. Thankfully my sister is a hairdresser, we try to give our son something that he REALLY likes (usually his nintendo ds) to distract him but it works sometimes and not others. We don't usually get anymore than 5 minutes to do it, and i've seen is have to leave it half done and finishing it another day. Haircuts are due this week actually, i dread them. But at least now i can understand it better.

So here's another question, for the last year my son has been taking swimming lessons, initially he was put back into mother and toddler classes as he was struggling emotionally, he is now up into level two swimming, but since being put up into level two he has went back to struggling. He is highly competitive, and if someone else gets to the other side quicker than him (which is a lot as he's the youngest in the class) he gets so upset. his swimming instructor was fab with him, very understanding and encouraging, but he's went off long term sick now. i just wonder if swimming lessons is worth so much stress. I am under a lot of pressure from the family to keep him in them but i just think all its doing it causing stress both to my son and to myself. However, i just discovered about swimming lessons for the disabled not far from myself. Do you think he would be more likely to cope in those lessons where the class in smaller and there are two instructors?

 

Lisa xxx

[NickyB]

So here's another question, for the last year my son has been taking swimming lessons, initially he was put back into mother and toddler classes as he was struggling emotionally, he is now up into level two swimming, but since being put up into level two he has went back to struggling. He is highly competitive, and if someone else gets to the other side quicker than him (which is a lot as he's the youngest in the class) he gets so upset. his swimming instructor was fab with him, very understanding and encouraging, but he's went off long term sick now. i just wonder if swimming lessons is worth so much stress. I am under a lot of pressure from the family to keep him in them but i just think all its doing it causing stress both to my son and to myself. However, i just discovered about swimming lessons for the disabled not far from myself. Do you think he would be more likely to cope in those lessons where the class in smaller and there are two instructors?

 

Lisa xxx

 

Hi Lisa

 

Does your pool do one-2-one lessons? My DS cannot cope in a group as there are too many distractions, and he is also ultra-competetive too. He has lessons once a week with an amazing lady who is brilliant with him. They do cost a huge amount (£20 per session ) but that's one of the things we put his DLA towards.

As far as the family are concerned (and because I don't always get on with some of my family, I may not have an objective view ), I wouldn't take any notice - it's completely up to you as his mother IMO.

 

Hope that helps

 

Nicky x

[lisa2701]

Hi nicky,

 

I completely agree, i really have to become thicker skinned. I have a very good relationship with the person who's putting preasure on me to keep him in, and i respect and trust her judgement, but i do think on this occassion she's wrong. That being said... I feel increadably guilty not taking him. WE have swimming lessons in a couple of hours, and although my son is very much looking forward to it, i know the tears, upset and stress are more than likely to be the outcome. i am dreading it. My pool doesn't do one to one that i am aware of. but like i said there is a swimming for special needs in a local school every week i think. Places are no doubt limited, and i can only imagine how long we will have to wait but i thnk i'm going to ask about it. As for todays swimming, i'm not sure whats going to happen .

 

Lisa xx

[bluefish]

Hi

my son was also diagnosed at 4 and I too knew it was coming, when I met with ds consultant at the end of his time at the cdc and he actually said it out loud I felt like I had been hit by a truck! I was amazed that I felt that way as I was pretty sure he was autistic as it had been mentioned when ds was reffered.

That was two years ago now, and I sometimes have a very sad day, but it does feel easier.

Thinking of you.

 

I bought lots of pecs on ebay at a very reasonable price, and our visual timetable helped loads! I hardly use it now as ds is more verbal and we have a good routine.

good luck with everything