Hi from another new member

[MrsD]

Hi,

 

I have twins, almost 3 years old, boy & girl. I've known my son was on the spectrum since he was 14 months old. He has not yet been diagnosed but I think the diagnosis will be made very soon. Last week the Child Psychologist completed the CARS questionnaire with my help and my son scored 39. Apparently mild/moderate autism ends at 36. 37+ apparently means severe autism. I always believed him to have mild autism but it now looks like it could be moderate to severe.

 

My daughter, my son's twin, also displays some quirky behaviour. I'm not really concerned about her because it's so minor, I think she'll grow out of it. She doesn't like wearing new clothes/shoes, won't wear dresses/skirts or anything in her hair. She loves routine and can get upset if it's changed. She has no social interaction problems. She's a few months behind with her speech. She's on the waiting list for the Child Psychologist who does think she's on the mild end of the spectrum.

 

I am very upset about my son. I can't help but think about the future and what it will mean for him. I feel sorry for him - I know I shouldn't - and I keep wondering WHY.

 

I have loads of questions for you but the main one for now is how on earth do you cope (emotionally) and keep positive?

Any advice would be most welcome.

 

Thank you.

 

Dee

[CWP]

Hi Mrs D

Sounds like you have a lot going on. There are positives to this. You are fortunate that diagnosis is happening so quickly. My son had a rubbish nursery and things only started moving when he started school. Hes nearing the end of his first year. Therefor you should have all the support in place before this happens. With regards to your daughter it is easy to start worrying if you are missing something. I also worry for my youngest son but like you I believe if there is anything it is much milder. As far as coping emotionally that comes with time and reassurance if you get good support. I was a year ago much like yourself but now I am accepting and enjoying educationg myself. One of the best things ever said to me throughout it all was that Connor is first of all Connor. He is still a person and infact a far more interesting one. No two kids on the spectrum are the same and so you raise them the same way you raise any other child. You cannot know what the future holds. You have to take care of your own emotions too and stop trying to hard - I know this from experience of making myself ill! Your boy will pick up on your stress. Continue to love him the same way you always did and you will find a way thought this. Don't know if my thoughts helped but I hope you can take some comfort.

 

Take care

x

[Kathryn]

Welcome to the forum Mrs D.

 

As my daughter was only diagnosed with AS at 15, I don't have experience of early diagnosis and the emotions and uncertainties that go whith it - others here will be able to answer your questions better than I.

 

I agree with CWP, I think that it's good for your son to be in the system at this early stage as he stands a better chance of effective intervention and support during the formative years of his life. So take hope from that, keep focusing on the positives, read as much as you can and talk to other parents and adults with ASD - there are plenty on this forum!

 

Your son will always be the same child you already love - the diagnostic label will help him get the help he needs to make the best of his future.

 

Take it one step at a time,

 

K x

 

 

[bid]

Welcome to the forum <'>

 

Bid

 

 

[lynne]

 

 

The diagnosis of autism brings along alot of emotions.

 

 

But austistic child are such beautiful people if you take away the anger, confusion, aggression.

 

 

My son would not be the child he is without autism and in fact I can not imagine him as a normal child.

 

 

Having a diagnosis is like having a bereavment anger, denial, frustration, acceptance. It has took my husband 7 years to accept our sons diagnosis.

[sassyj]

Hi,

I have to say I agree with a lot the others have said. diagnosis is a shock even if you were prepared for it, (having things written down in black and white can be much harder to take) you need to give yourself a bit of time to adjust , to be honest we had our diagnosis last oct and we are still coming to terms with it so dont be too hard on yourself.

You should be pleased that at least the professionals diagnosed so early, my son was 6 before dx and missed out on a lot of valuable therapies and treatments so although it may not seem like it, at least your son has early intervention.

 

I would just like to say, a lot of us are in the same boat here and I have found the forum to be a great support group so hope you find that too.

 

By the way, welcome to the forum.

 

Sarah

[MrsD]

Hi,

I have to say I agree with a lot the others have said. diagnosis is a shock even if you were prepared for it, (having things written down in black and white can be much harder to take) you need to give yourself a bit of time to adjust , to be honest we had our diagnosis last oct and we are still coming to terms with it so dont be too hard on yourself.

You should be pleased that at least the professionals diagnosed so early, my son was 6 before dx and missed out on a lot of valuable therapies and treatments so although it may not seem like it, at least your son has early intervention.

 

I would just like to say, a lot of us are in the same boat here and I have found the forum to be a great support group so hope you find that too.

 

By the way, welcome to the forum.

 

Sarah

 

[MrsD]

Thank you for your advice and welcomes.

 

Yes, my son is beautiful, he is such a sweet little thing.

 

He has been involved with our local Children's Development Centre for quite a while now. I think one of the main reasons he was seen so young was concern over his small head (diagnosed as Microcephaly). Initially it was the health visitor that was concerned who referred us to a paediatric consultant who was also concerned. My son had an MRI on his head and also blood tests for chromosome abnormalities and everything else. The results all came back negative, thank goodness.

 

We've not had a formal diagnosis yet but, like I said, the CARS form was done last week. The consultant requested this to be done. During the past 6 months there has been dispute between the professionals invovled re my son having ASD. The consultant and psychologist agreed ASD (I also agree). The portage teacher & special assessment nursery team leader both disagreed on ASD. I've not discussed it with them recently but I've been told they are aiming for a "possible diagnosis" by 18th June. I think this date is when my son is due to finish at the special assessment nursery.

 

If anyone can recommend any books I can read, I would be grateful. I know there are a lot of books out there but I would be interested to hear your recommendations. Many thanks.

 

Dee

x

[joybed]

Hi Dee I too have twins who are just 5. The boy is undergoing assessment at the moment and like you we have had problems with people disagreeing on a diagnosis. The ed psych thinks he is and he scored mild to moderate on CARS the paediatrician things he is copying his older brothers behaviours who has ASD. I totally disagree as they are completely different children obviously some similarities. Piers is a beautiful boy but is also very aggressive, avoidant of doing anything asked of him and in his own world most of the time. His spoken speech is fairly good but understanding not so good and he has learning difficulties. His twin ,a girl like yours, is often the victim of his aggression and is frequently covered in bruises and bite marks, as am I. She is very shy and lacks self confidence and has some odd ways like ignoring her friends and avoiding eye contact but I think this is just extreme shyness. Good luck with getting a diagnosis.

[MrsD]

Hi Dee I too have twins who are just 5. The boy is undergoing assessment at the moment and like you we have had problems with people disagreeing on a diagnosis. The ed psych thinks he is and he scored mild to moderate on CARS the paediatrician things he is copying his older brothers behaviours who has ASD. I totally disagree as they are completely different children obviously some similarities. Piers is a beautiful boy but is also very aggressive, avoidant of doing anything asked of him and in his own world most of the time. His spoken speech is fairly good but understanding not so good and he has learning difficulties. His twin ,a girl like yours, is often the victim of his aggression and is frequently covered in bruises and bite marks, as am I. She is very shy and lacks self confidence and has some odd ways like ignoring her friends and avoiding eye contact but I think this is just extreme shyness. Good luck with getting a diagnosis.

 

[MrsD]

Hi Joy,

 

Thanks for your message. My son has just started being aggressive, about 3 weeks ago so this is new to me, upsetting too. It started by him hitting his sister when she was upset or crying. It's not the noise that's affecting him because when they play together she screams with excitement sometimes, it's ear piercing, he's never hit her when she's screaming happily. It's when she's emotionally upset (from hurting herself) or having a tantrum that he hits her. Saying that, yesterday was the first time he ran up to her and pushed her over on the path outside for no reason. She cried so he tried to hit her. I told him no and that he had hurt her, so he hit me instead! Because this is a new side of his behaviour that I haven't seen before I am finding it very upsetting.

 

The problem is when he knows he's hurt he (or if he sees anyone hurt on tv, cartoons etc), this upsets him greatly. It escalates his behaviour and he will throw himself around, very distressed. I've been telling him he's hurt me or his sister when he's hit us, maybe this is the wrong thing to do because it upsets and aggravates him even more.

 

His sister isn't copying his ASD behaviour in any ways, ALL of the things she is presenting is completely different to my son's ASD traits. He has no problem with change of routine, new clothes etc.

 

Good luck to you too.

 

Dee

x

[MrsD]

GOOD NEWS in a way but also sad. Today was the Clinical Case Review for my son, the Consultant IS diagnosing ASD. Apparently the CARS form which the Child Psychologist completed, with my help, is quite significant in confirming the diagnosis. The Consultant and Child Psychologist always did think my son has ASD, I suppose this has confirmed it for them. They also said it would help him get the extra help he needs when he starts pre-school in September. He'll be 3 years old next week.

 

Dee

(A worried mum with a very recent diagnosed gorgeous ASD little boy)

x

[thomastank]

 

 

<'> Big Hugs and take care of yourself. My son was diagnosed a year ago and is coming on in leaps and bounds with the right support x