Diagnosis of autism

[fullstop]

Hello my little boy Finn, just 5, was diagnosed with autism last Friday. We have waited 8 months since our first meeting with the paed. Back then I remember just thinking that he might have some mild learning difficulty or perhaps a ADD. I had no idea that it could be autism. I'm afraid I was very ignorant of the condition then and to some extent still am.

Since they told us on Friday I've just gone into free fall. I understand that it is just a huge spectrum - but where my little Finn is on that spectrum I don't know. At the assessment they just seemed to say that he had 'huge potential' and that 'each individual is different'. I think I was in shock anyway.

His speech was delayed but the past year it has really come on with much better sentence formation. Although it is abit stiff and rigid. He plays well with his older brother and sister at home (age 7 & 9) but hasn't made any friends at school - he is in full-time mainstream school. His concentration is not great and he does seem to 'get really into' various toy's and talks a lot about them e.g. ben 10 etc - physically he is perfect but this year his eye contact has not been great. His play is sometimes silly and more immature than children of his age. He seems to like to shock me - saying silly things I don't understand this.

I'm terrified of what the future holds for him - it seems to me to be light - if there is such a thing. Will he regress? - will he suddendly start walking on his toes? Will he go into his own little world? An how can we help him? Can anybody advise me or help me. I have gone into the ASD website but I can't seem to find Finn in there. Perhaps someone might be in the same situ. or have gone through the same things. I just need to know where or little boy is on this very wide spectrum and what it means for him and what is the best for him.

Thank you m x

Please please don't panic.

i know that is so hard.

You can't know 'where' he is on the spectrum, you can only deal with the child that is presenting himself to you now.

Children with Autism often play better with older children (who make more allowances) or younger children (who don't make as many complex social demands).

I don't think he will start to walk on his toes, or regress. Ds1 hasn't yet, and he's 7.

Do you have a children's psychiatric nurse to talk to? In a way I'm in a similar position, a few months ago Ds1 was diagnosed with Autism and ADHD.

but what has really helped is realising that the diagnosis has changed NOTHING except the level of help you can demand for him at school. He's still the same child. He would have been the way he is anyway.

I hope this helps, please have plenty of gushes and tantrums to your friends about it, here and IRL.

Oh there you are. You made it

Welcome to MN. Lots of friendly folks here.

I know you'd actually really rather not be here at all though and I'm very sorry about your news. Things do get easier with time though and the mad panic and brain-wrigging to find a cause, solution and just something, anything to make it alright will subside as you get to know more about yourself, your child and autism.

Take it slowly and be very kind to yourself and keep your research and questions going at a steady ongoing pace rather than an exhausting sprint.

If you have any specific problems or questions, start a new thread with the crux in the title and you'll find a lot of people who have been there before. We have teachers, lawyers, those with experience of tribunals, Speech and Language therapists, those with children at m/s, those in home ed and those at special. We have some doing Higher or Further education in the subject and some very very specialist parents.

My advice is always the same however,

From today and always, write down every contact with every professional or 'lead' with the time and contact and details of conversation. This will help you to order your life and remember what has been promised and forgotten, and what support groups are out there that you can't access now but might want to in the future etc.

hello again! also consider putting in a DLA claim (disability living allowance) benefits claim for him now you have the diagnosis. this is awarded on the basis of your child needing more care than a typical child his age.

Hello there! It is a year now since my DS (now 4) was dxed with ASD, and I wish I could show you the before and after, not so much of him (he has come along with speech, play - obviously still a very long way to go, but tonight he was sitting for dinner with friends in the restaurant and asking the waitress what he wanted, saying please even!) but of me and DH as parents, in terms of coming to terms with it.
It does get better - the time around the diagnosis is very very hard, but it does get better. He sounds like a lovely lad

Even if you have been expecting it diagnosis is a huge shock. We totally didn't see it coming at all, and I felt completely devastated.

I remember saying to a friend (who also has a son with autism), what will happen to my lovely darling boy -- I felt like all my dreams for him had been taken away.

You will learn a lot more than you thought possible about autism and find out where your lovely Finn is on the spectrum and how to help him. I would suggest starting with the National Autistic Society -- I rang their helpline and they sent me a pack of material to read and very helpful it was too (including a brilliant info sheet for grandparents).

But you need to give yourself time to feel shocked and sad and find within yourself the courage to face the new situation you're in. I cried everyday for weeks (and still do quite often, 18 months in) but it does get better and less painful and confusing. In the end, he is still who he is and that is the boy you love.

And do keep posting on here, it's a wonderfully supportive, knowledgeable and accepting virtual community.

Thank you very much. Just finished the whole breakfast mayhem here and rushed to the computer - not like me at all!

I know that time will help us a lot - but I suppose I just want to get it right for him from the start. I'm usually such a strong person & good mum - now I just feel like I want to run away.

I have been in touch with the Nat. Autistic Society and spoke to their helpline but nobody could answer my question about where Finn was at. It was all just so general - I could get that information from the library.

Anyway it is lovely to know that there are people out there that understand and take time to write such supportive things.

We live in West London.

Take care m x

The thing is fullstop that the spectrum is so huge and in the end I stopped finding where my DS was on it but just tried to deal with his symptoms rather than getting obsessed with the actual diagnosis...so for my DS its sensory stuff and speech that principally affect his qulaity of life particularly at school so thats what we are currently trying to concentrate on. The initial diagnosis is so overwhelming I know. But all I can say is that whilst parenting DS is not the journey I envisaged, and we are now on a totally different track, it can still be a fulfilling and fantastic one...and whilst I am frustrated/angry/frightened etc etc I have also become a more tolerant,kinder person-DS has taught me all that.
Our children ahve so much to offer and none of that has changed with a label-it just hopefully means he can get all the support and help you and he deserve.

Hi fullstop,
I have a DS aged 3 who was diagnosed with ASD last month. We also were not told where on the spectrum he was. The reason being apparently that due to the young age, they change so much. Hope this helps. Keep posting!

It's very frustrating at first, not knowing 'where' on the spectrum your child is, but you'll learn that nothing about autism is concrete and no two children are the same, even with the same diagnosis the prognosis could be very very different.

I think you eventually give up trying to figure out 'where?' and focus more on the 'what?' as actually that is much more relevant.

A very good place to find out more about the 'what?' is BIBIC. They give you a highly detailed 2 day assessment with strategies to help and are currently doing it for free (with an admin charge of £50). It will cost you travel and accomodation as it is near Bristol, but you'll meet lovely people who really care and get to play on lots of lovely equipment.

They are a reputable organisation too so any reports that result can be used as 'evidence' in the future if necessary.

hth

Hello

I?m just trying to make sense of things and get it right from the start. Like lots of mums, I?m used to being organised and in control and now I?m lost ? this is a maze. He?s a lovely little boy, my little baby and I don?t want to lose him to autism. Thanks for the BIBIC tip, I?ll follow that up. Thank you all.

Take care m x

We're in west London too, and we too were told that they change so much when they are little that they'd rather not place them on the spectrum, which tbh is fine by me. I try to think in terms of what DS needs, as some other MNetters have said, rather than specific labels.
You won't lose him to autism - he's still the same lovely little boy

Hello

I'll keep reading, this information is just so important to me right now. It's a lovely sunny day here and I'm going to take them out in the sunshine.

Take care m x

I know it's frustrating not knowing how things are going to pan out - I have these worries myself about my DS, I honestly couldn't say for sure whether he will be able to work and live independently as an adult - but I would take reassurance from the professionals saying that your DS has huge potential - I think that's pretty much as far as the professionals will be prepared to commit themselves.

try not to worry overly about "losing" your son to autism and regression. From what you have described he is able to and wants to communicate, and his language has improved over the last year, that is positive, and is only likely to carry on improving.

Hello

Gosh it's such a funny ol' world! I just can't fix this problem and I find it difficult to get around that fact. I want to get to the nuts and bolts of it and make sense of it but I can't.

I don't know what caused it, I don't know how bad it is, I don't know where we're going with it. All I can do is walk along beside it holding Finn's hand and learn as I go along!

Nx week they start school again and meetings will start with the Senco etc (AAAh...) Catholic school - not very sympathic/supportive or forward-thinking (irony)!

Take care and thank you very much mx

Write down details of every encounter with every professional.

I also agree you shouldn't worry he will now regress. My DD regressed at 2.10 and this has caused a lot of concern from doctors, and sparked a lot of testing, as it was very unusual indeed to regress at that age in the way she has.

Hi Fullstop

we are just starting out on the path you are on, our son Adam (2y 11m) was assessed for asd last week and the opinion of the peads con was possibly/maybe.

I just wanted to say your comment "he's a lovely little boy, my little baby and I don't want to lose him to autisum" really struck a chord with me.

The peads con said "there is a very intelligent little boy in there" I find the thoughts of him being trapped, inside somehow so upsetting.

I'm sure he will come out SO much over the next few years....

Hi fullstop. my DS1 (3.4)was diagnosed in july last year. Awful times, take care of yourself. Let it wash over you for a bit, you'll eventually get a hold on it. We cried for a week, lived in a daze - and then, like every parent on these boards, we started to fight it.

nobody has put it out there yet (i think) but when i came here I had a few people told me about ABA/VB Therapy. It's one of the most popular ways of treating the learning differences in your child (which in many ways is all autism is - your DS does not learn through osmosis as well as some other kids do) We started it immediately and 7 months later we are.... well, a paed specialist told us last month that besides a speech delay, DS1 was no longer exhibiting behaviours considered outside the 'NT'. He has done amazingly, and I urge you look into this area when you feel up to it.

if your ds has managed to get to 5 without a diagnosis, it means he's doing pretty well. in my book. Try not to get too concerned where he is on the spectrum (not that i didn't at first) The sectrum is so wide, and for many kids ASD dx'd, a placement on it is not static thing. In July they told us DS was 'somewhere in the middle'. Not so today.

I really feel for you, It gets easier, and there are absolutely ways you can deal with this. All your DS needs is a little extra help.

google 'retained reflexes' and if these sound familiar, find a sensory trained OT and they will give exercises to help integrate.

also look at treatingautism.co.uk website. loads of good info, especially on gluten free, casein free diet which helps many.

Hi, my DS was diagnosed last year at 2.8. Its been a difficult year and a big adjustment (my DS regressed after developing typically up to age 2). Its not usual to regress after 2.5 - about 1/5-1/3 children develop typically and then regress but usually before age 2-3. Later regression is not usual. If he got to 4-5 without too much concern that probably places him higher up the spectrum.

In terms of what you can do to help. Agree find out about ABA - it works for us but is expensive (we have applied for local authority to fund it); but the quality of teaching is so much higher than we have found in local authority provision. You can hit the jackpot with teaching assistants or you can end up with someone with little experience. You need to make sure he gets the help with language / communication / social skills now - he may have to be taught things specifically that other children just absorb from the environment / from observing other children. My son does not learn from his environment / his peers at all - so he has to be taught eg even when and how to say hello and goodbye - but he does learn. It can take lots of repetition but he is gradually learning what comes naturally to other children. He does social skills groups every session, not just once a week. Often autism teachers or speech therapists will come in and train staff how to run these.

Its important to realise your son is able to learn but may need a completely different way of teaching. I would also say concentrate on the social as much as you can when he is young because 5 year olds boys play is not yet that sophisticated. He may need an adult to model eg how to invite a friend to play etc and this is as important, if not more so, than his academic learning right now. Unfortunately teachers don't get much training on how to teach social skills (we use ABA tutors to teach nursery staff how to do it).

You have to be pushy to get things moving eg ask the school to call in the ed psych / autism outreach service / speech therapists and set an individualised programme for him. But provision can be patchy and if you can afford it I would look at ABA / private autism specialist speech therapy (post on Yahoo ABA UK site for info in your area). When my son goes to school we intend to send him part-time and carry on doing therapy at home. Don't feel you have to go along with what is suggested - learn to trust your own instincts, alot of professionals aren't very well informed about autism, even in my experienced some who call themselves autism specialists - it seems hard to believe now but you are the only real expert on your child, absolutely trust your gut instinct. If someone describes what children with autism do or need and you do not recognise your child in their description then it is them who have got their assessment wrong not you. It took me a while to trust myself as like you I knew nothing about autism beforehand, but my instincts have been right in the choices we have made which have often been against what the mainstream provision has offered.

Also don't be afraid to look around for education options. SN money is distributed on a deprivation index so schools in less leafy areas will tend to get more SN money and often have much more experience. If you don't get a good reaction at the start, then don't waste time hoping it will get better. Local Authority's can send autism teachers in to make suggestions but have no power to make schools actually implement different approaches. Better to find a school who you feel are really on your side even if its one you would not naturally have considered had things been different.

Lots of people have recommended Hanen Talkability book - my son's speech isn't at the stage where this would be useful - but your son sounds like it might be something to look at. If you search threads it should come up.

Good luck, it does get easier.

Hello

Thanks for all this amazing information and kind words of support. I'm writing everything down! I'll look into this aba/vb therapy and speak to someone.

The school the children go to - Catholic/London school) really think they are the 'bees knees' - and if you query or ask too many questions your're given the 'you can take your child out at any time' response.

I have the other two older kids to worry about and need to get to work too, but I don't feel as lost now and need to get on with it.

thank you m x

this is something you might find helpful. I think lots of SN parents relate to it. Not sure where it comes from, its just something that seems to get passed on when times are tough.

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Hi Fullstop
My son was diagnosed with ASD a little while ago. He is now 10. Looking back the signs where all there, I just didn't know what I was dealing with.
My son has always head banged but when he went to junior school he started to finger bite as well, to the point where he has callouses on the finger he chooses to chew. Although chew perhaps is not the right description, what he does is bite down on it almost like his finger is a gag.
He has a tendancy to take things literally. I told him to keep his eyes peeled for a parking space once and he complained that peeling his eyes would hurt!
He will talk nonstop about his favoured subjects. He needs no imput from me at all. Infact he will talk on his inward breath.
He gets distracted doing anything like getting dressed or running the bath. I have to stand behind him to make sure he gets on with tasks.
Anything thing that goes wrong is a huge drama and will quite often result in a hysterical tantrum, which can be embarressing when in public places.
When I was first finding out about asd I bought a book by Tony Attwood, this was a great help and my son has been diagnosed with Asperger's Syndrome. Try and get hold of a copy, I found it immensly useful.
I went to the school Senco teacher in the end who was really helpful and made the referral to the specialist for me. Thankfully she had been watching my son for for a while and also felt there was something that needed to be looked into. I didn't have to try and convince her. Do you have someone like that at the school your son goes to?
I do hope that you find the help and support that you need.

Hello

Cried all day yesterday - watched the 'Young, Autistic and Stagestruck' on T.V. on Monday night!! As 'newly diagnosed' - not sure if the time was right to watch it!

I'm finding this site very helpful - and the people amazingly supportive.

I really love the Italy/Holland story - you know I'd prefer Amsterdam to Venice anyday of the week (not that I've been to Venice)! but I think Italians are way too fond of themselves. - Thank You eat you veg.

Qwertymum - I hope your little boy is ok and you too. Thanks for the ref. on the Tony Attwood, I've written it down! Finn's school is a bit rubbish in terms of Special Needs - but we're just starting that road now so we'll see how that pans out. The consultant paed. at Ealing has been very professional and on the ball so we feel happy with that.

Take care m x