Any chance of advice from parents of children diagnosed with autism?

[kiki]

Hi. I am looking for a bit of help/advice from those who have had a formal diagnosis of autism for their child.

I was wondering how long it took to actually get a diagnosis, and, were you taken seriously when you spoke of your concerns?

Caidan will be 18 months on Saturday. He is a very loving child with us and smiles for us, but will practically ignore other people. He can't say any words, he used to say mama and dada but stopped about 4 months ago. He won't clap his hands, wave goodbye or play with toys properly.He never brings anything over to us to show us. He hasn't reached ANY milestones within the 'normal' time, he ignores us when we shout on him, he 'headbangs' anything and everything, he has recently started hitting us and he gets really frustrated and kicks out all the time. He doesn't point to things, he doesn't understand when we ask him to show us where his teddy is or similar. He often goes into a 'trancelike' state, his sleep is disturbed. He concentrates on one thing, which at the moment is a plastic water bottle, he strokes his face with it and puts it up close to his eyes, almost like he is hypnotising himself with it. When he is sitting, he constantly shakes every part of his body. There are many other things as well, too many to mention.

He is currently under the care of the Early Development Specialist because of his late crawling and walking and she is coming to see him next week. She hasn't seen him for 5 months so she knows none of the above things.
Obviously we shall be telling her everything and she will see for herself, but am I likely to just be written off as an over anxious parent?

I know all is not right with Caidan, and from what I have read and from doing the CHAT test, he has many classic signs of autism.

Please, if you could share your experience of how easy/difficult it was to be taken seriously, I would be so grateful.

Sorry for the long post and thank you if you read it all!

xxx

 

[kelzyboo]

It took just over a year to have my daughter Abbie diagnosed with ASD, she had just turned 5 years old!

I noticed that she was different from day one and she didn't walk until 19months old but it wasn't until she started nursery that her lack of social skills were spotted (she is my only child), she was refered by the school for assesment but i had to constantly phone and push them to see her as soon as poss!

She was very agressive at school and home at the time, which helped them to see her quicker but i still had to fight to get the assesment.

I don't think you will be dismissed as just a worried mother, they have to take your concerns seriously and i'm sure they will. You may have to keep on at them, the sooner he is diagnosed (if that's what it is), the sooner he will get the best possible help to progress.

You have every right to be listened to, no one knows your son better than you and if something doesn't feel right to you, then it probably isn't.

Hope they listen and investigate further, good luck xx

 

[kiki]

Thank you.

Like you, I have known from day one that something isn't right, I just want to know what it is so we can start dealing with it and helping him in the best way possible.

I really hope it doesn't take a year, that must have been awful for you, all the waiting

xxx

 

[kelzyboo]

It was a little stressful to say the least lol but we knew she would be diagnosed, ever since ASD was suggested as a possibility i knew in my heart thats what it was.

Things are much better once they have been diagnosed, my little girls doing brilliantly with her 1-1 support at school and i feel i understand her behaviours a little better than i did before, we still have a way to go and i have a lot to learn but were getting there, the diagnosis is the beggining of the journey not the end as i first thought lol

I have a wonderful daughter, who's doing much better now she has the right support. I'm sure your beautiful little boy will progress even better when his needs are properly catered for and thats why we mother's push to be diagnosed x

I hope it doesn't take you as long as it took me, hopefully as he is younger than my little girl was you will go a quicker route than we did.
I hope you get your answer and the support you need as soon as possible, it really does make a world of difference. Good luck xx

 

[kiki]

Congratulations on the new pregnancy btw, best of luck to you xxx

 

[kelzyboo]

Thankyou xx

Hope it all goes well for you x

 

[Twinminator]

Hi kiki, my daughter was "diagnosed" on Friday, she is 22 months old. When I say diagnosed, she spent an hour and a half in with the head paediatrician, who said she would have to be observed by a wider group of professionals to get an official diagnosis, but that because she was part of that observation group, she could say with no doubt that they would agree with her and the diagnosis WOULD be made.

When she was 18 months old i asked the health visitor to come round as she had no speech and I was wary of saying I thought she was autistic, because I just wanted to see what the HV made of it. She was rubbish, she didn't even really watch her, she concentrated on me like she was purely there to reassure me I was being over-anxious. She gave me a patronising leaflet about how to share language more efficiently with your toddler (the kind you might give to a teen mum with no clue) and left.

My first positive step was about a month ago, ringing up the phone number on the National Autistic Society website, and described her to them, who suggested I make an appointment with the GP. He said quite apart from anything else, the lack of speech alone at 21 months was worrying, so referred her to the paediatrician (who we saw on Friday) and told me to get the HV onto referring her for a hearing test too.

The important thing it seems is to push for something to happen before they turn three (to quote the reading materials I was given on Friday, "In order to get a diagnosis for autism, abnormal development must have been confirmed before the age of three years"), the people who seem to be struggling for any support are those only just starting to try and get the ball rolling with school age children.

I would say that 18 months is a very difficult age to say yes or no, she is or isn't autistic, so the nearer to two years old you can wait, the better chance you have of proving you're right, as she'll really be standing out by then if she is autistic. I'm due another baby in March and really want my girls to go to pre-school for a few sessions a week, so really need something in place otherwise they're just not going to cope with her, or her with it.
If you want to read my thread which will give you a bit more info about my experience, it's called "First step on road - toddler autism" or something like that

Good luck xxx

 

[kiki]

Thank you so much hon.
I hope you are getting all the support you need.

I will voice my concerns next week to the Early Development Specialist and let her take it from there.
I am still hopeful that he is simply delayed and that he will get there eventually, but I feel I can't ignore things that are concerning me.

I shall certainly read your thread. Best of luck with your pregnancy and good luck for the future.

xxx

 

[Twinminator]

Thanks xx Keep us posted about next week xx

 

[Twinminator]

Thank you so much hon.
I hope you are getting all the support you need.

I will voice my concerns next week to the Early Development Specialist and let her take it from there.
I am still hopeful that he is simply delayed and that he will get there eventually, but I feel I can't ignore things that are concerning me.

I shall certainly read your thread. Best of luck with your pregnancy and good luck for the future.

xxx

PS Your opening thread sounds a lot like my daughter, and I too was concerned but didn't expect for a second I'd get an autism diagnosis so young...
I would prepare yourself, I thought I head my head round it as I had taught infants with autism when I was teaching, but when a professional looks you in the eye and says that's what your LO is facing, well let's just say I could not have predicted my reaction - first surprise, shock, then a few hours later, devastation and self- blame. Then follows mourning, for the possible loss of the things you dream of for your child growing up, the what-ifs, the worst case scenarios e.g. will they EVER grow out of X,Y,Z... I'm still in the middle of this grief and although I'm fine when I'm busy, I'll be in a moment's quiet and I disintegrate into tears again. I want to wake her from her nap just to hold her and show her I love her and to protect her

I'm really not trying to scare you, I hope as much as you do that all is fine, but I was in the mindset that it couldn't possibly happen to me or mine, and as much as I've preached to pupils' parents about how good the prognosis is for children who get support when young, when it's your own that is little comfort, it seems so unfair that your baby, the little precious that you made, will have to struggle more than his/her peers just to achieve the same averages.

Sorry, but I wish I'd known how all this was going to feel beforehand. I hope I've not "scaremongered" and actually been of some help

 

[kiki]

Don't worry hon, you aren't scaring me. One of the reasons I came on this section was because I am trying to prepare myself for the diagnosis. I have been doing alot of research on the subject because I want to arm myself as much as possible.

I know if he is confirmed as being on the Autism Spectrum, I will suffer the same feelings as you did, but, I keep telling myself, at the end of the day, he is still Caidan and is still my little angel, no matter what, and we are trying to prepare for the worst whilst hoping for the best.

Thanks again for your help and again, good luck to you and your twins and the LO on the way.

xxxx

 

[Midnight_Fairy]

My sons diagnosis took about 3 yrs. I think they just wanted to see how he grew and developed first. He was diagnosed at 5.

I knew he had it anyway.

Hugs xx

 

[Twinminator]

Midnight, I think the diagnosis is a bit like giving birth, iykwim, it's all happened so quick for me I hadn't really prepped myself or thought it would be happening so rapidly, I'm in a daze. I had read on here so many times how long you have to wait and how hard you have to fight, and for me it was one push and whoosh. Now I'm like "whoa, slow down, I'm not ready for all this!"
I'm so sorry you've had such a struggle for so long, neither way is nice xx

 

[Midnight_Fairy]

Midnight, I think the diagnosis is a bit like giving birth, iykwim, it's all happened so quick for me I hadn't really prepped myself or thought it would be happening so rapidly, I'm in a daze. I had read on here so many times how long you have to wait and how hard you have to fight, and for me it was one push and whoosh. Now I'm like "whoa, slow down, I'm not ready for all this!"
I'm so sorry you've had such a struggle for so long, neither way is nice xx

He is only mildly on the spectrum, I say that loosely as that does not mean he is not hard work lol. He does not have the typical traits, he does talk (although monotone) he does have eye contact and imaginary play. It was very hard I think and I guess they just wanted to be certain. His difficulty's are empathy and changes to routine, sensory. I actually think he is more aspergers, when he was diagnosed they said he was more on the aspergers side but could not diagnose him with that as he had a speech delay.

It was a long process when I think about it but at the time, It didnt make a huge amount of difference as he did get funding at preschool and school for one to one help without the diagnosis. A diagnosis has not changed very much because for more help you need a statement which does not come with the diagnosis, so in that scheme of things, it does not make a difference.

I already knew he has it though anyway, I think you just know dont you? When they told me the diagnosis at CAMHS I just said "I know" and I smiled, I was happy to have finally been proven, not in a game way lol but I just knew it was ASD and if it wasnt, well then I didnt have a clue. I felt relieved as I had finally had answers and now we could move on and help him even more.

I did have a down time a few months later, realisation, but I got through it and I have an excellent support network of friends with ASD children. That makes a huge difference

Hugs xx

 

[Twinminator]

I'm hoping there's plenty in this area in that respect, I suppose I'll find out more from the HV when I see her again in a fortnight
Thanks again xxx (and sorry for the hijack kiki xx)

 

[kiki]

I'm hoping there's plenty in this area in that respect, I suppose I'll find out more from the HV when I see her again in a fortnight
Thanks again xxx (and sorry for the hijack kiki xx)

No apologies needed!!

xxx

 

[Midnight_Fairy]

sorry kiki, if you want to know anything ask away xx

 

[baby.love]

I noticed when my son was 18 months that something wasn't right, numerous trips to the Dr/HV did nothing... They always fobbed me off saying he was just developing differently blah blah blah!

Well i didn't let it go and kept on at my HV, in the end she referred us to a paediatrician (this was at 4 yrs old) .. The paed saw him on that 1st appointment and straight away referred us to see the team for a diagnosis... Finally last July we got the diagnosis of Moderate ASD with delays across all levels, He is also hyper sensitive with food/sounds etc..

I wont lie and say it was fine, it was the hardest thing i have ever had to deal with.. Seeing these people study my little boy and ask so many questions.. To us Ethan is just Ethan so answering them was so hard.

So now here we are 5 months along from the diagnosis and we are loving life and not letting Ethans ASD hold him back. He is in mainstream school and doing amazingly, he can now read and is learning to write... He can now speak in full sentences (last year he could hardly speak or understand when someone spoke to him) and has so many friends its unreal.

He still has his ways - Flapping/lining up toys/routine etc, but we as parents have learnt to adapt our parenting styles.

Anyway i am rambling now I hope what i have put makes some sense lol...

Good luck and please remember that a diagnosis of ASD is hard but it does get easier and there is a light at the end of the tunnel xx

 

[Sparkleyone]

Hi there,

I hope you get some answers soon. I know some areas are reluctant to give a diagnoses quite as young as 18 months (although some are, as you can see from the Sarahs response.

I think its good you have noticed that something might not be right with your little boy. My son had all of the typical signs from birth, but I never noticed as I was uneducated on Autism. It wasnt picked up on my GPs, HVs etc.

My son was 2.5 when we started on the path to getting a diagnoses and it took a full year. It was our speech therapist who immediately picked it up. The Early Intervention team will no doubt explore your concerns, as like you have already noticed, there does appear to be some *red flags. (Sorry, I hate to tell people that I agree with their concerns. I know how it feels, having been in the same position) A normal GP from my experience, would be more likely to tell you to wait and see. My own GP told me at 2, he wouldnt put a referral in, as he likes to wait and see how things go, incase it is delayed development. But I firmly believe the experts, those knowledgable in autism can see it straight away. I can normally tell within a few minutes of meeting a child with autism, as I know what the triad of impairments is, even though it can show itself in different forms. I have read so much about autism, I am not an expert, but I feel like so many health professionals dont know alot about it. The lady who your son is currently under will surely be aware of autism and the signs.

My little boy goes to a special needs school as his autism is not at the milder end, however he is doing well. Its nearly 2 years since we started on the path of autism, and I feel life is starting to settle down for me. I have bad days, but my son is making progress and doing new things all the time.

My son went to a specialist nursery (because it was picked up on early enough) and I dread to think how it could have been, had he of went to a normal nursery with no support because his autism hadnt been picked up on.

You're welcome to PM me anytime, if you want any ideas of things you can do to help your son in the meanwhile etc. I honestly dont mind one bit.

I know so well how worrying a time it is.

Take care, Xx