Autistic ds - I'm so desperate...

[helplessandworried]

Posting for traffic after a horrible sleepless night...

DS is 19 months old and has been more or less diagnosed as autistic. The red flags have been there all along, but I happily ignored them until it was no longer possible: just fleeting eye contact, no words, no imaginative play, no interest in other children, no imitation whatsoever.
I'm extremely scared of the future, of the life he might lead and the impact it might have on dd and my husband who is already struggling with depression. There are so many questions noone can answer: Will ds ever learn to talk? Will he ever have friends, use the toilet, hug us, have a job? Will he have any feelings for us at all? Will we be able to cope? Will he have violent outbursts and hurt his sister? Will he decline and stop smiling at us which he does sometimes? Will he be happy? Will we ever be happy again? I'm so sad.

Please tell me everything will work out somehow... Please....

Aww I bet that hand holding was amazing MrsB

Autistic retired History Lecturer here.
Ds 2 is at uni, he is also on the spectrum. He is at uni, studying Lit and achieving firsts. He did share this year but is going back to living on his own next month, sharing isn't for him, too unpredictable. He does have friends, and a girlfriend, he goes out regularly. He needs help and supervision at uni for some things, and regular reminders to eat and drink, but he's getting firsts and having fun.

I worked with a little boy who was diagnosed at 2- so also very early. He spoke at just over 3 and now attends a mainstream school (with support) and is a very happy little chap. When I started with him he was non verbal, no eye contact, didn't respond to name etc.

Look into ABA therapy, PECS, SALT, and makaton sign language if you haven't already. Being diagnosed early is a GOOD thing as there's tons of time for new pathways in the brain to be created. The world is still his oyster and with your love and support he can achieve so much.

One ex student of mine didn't learn to speak until he was 8, he's an adult now and whilst in 6th form he compleated the DofE award, something that as a child would never have seemed possible. There's no age limit on learning, he may not pick up skills at the same time as many of his peers but don't write him off, he has all the time in the world to learn.

I have 2 girls on the spectrum, and my ds is under investigation.

Dd1 has severe autism. She was dx'd at 2. She has a severe language disorder, and learning difficulties. She can (and does!) talk, a lot. She is 10, and it hasn't always been an easy road, but she is doing really well. She attends a SN school, and has fulltime 1:1. It is absolutely the right place for her, and she is thriving. So much so that she represented her school at a national sports championship recently. I could not have predicted, from when she was a non-verbal preschooler, where she would be today. Some thign she's has surpassed easily, others she has not yet managed to master (and may never). But then life is not certain for any of us, never mind how much we like to think it is. She has friends, and is very sociable. She is affectionate in her own way - we don't really get huge hugs or declarations of love, but she will seek us out for comfort, she will allow a nose rub instead of a kiss goodnight, and she likes to be stroked/patted.

Dd2 is 8, and has Aspergers. In the face of it, she has it easier as she doesn't have the severe needs or learning difficulties etc, but her issues are still there, and her challenges are not lesser, just different.

I don't work, which wasn't always the plan. But I can't make it work, and still meet the needs of my dc, and so that is how it is. Again, not better or worse, just different to how I was expecting my life to be.

No one can tell you what the future may hold but it may be brighter than you think.
I have a ds and a dd with autism, ds was diagnosed at 2 and a half and dd at just two. Ds at diagnosis had no words, extreme challenging behaviour and learning difficulties. He learned to speak freely when he was seven although he had plenty of echolalia before then.
He's 20 now and the most lovely young man. He attends a mainstream college where he is studying for A level equivalents and intends to go to university the year after next. He has friends, a great sense of humour and more grit and determination than anyone else I know.
Dd at diagnosis had a developmental age of 6 months, she couldn't smile laugh, wave or clap but she is twelve now and in mainstream secondary.She has friends, is in all the top groups, is very talented musically and just a really lovely girl.
My advice would be to post on the SN board, start demanding support be that from Portage, SALT, or a SN nursery. It really is a case of those who shout loudest get most support so learn to shout effectively now as you will be doing it forever more. Try to look after yourself too your dc needs you to be fit and well to be able to do your best by them so try and find some respite where you can.

It was fanjo- ds sort of sneaks physical contact in by sealth so I never know when it will happen but it makes it all the more brilliant!

Stealth...

I can't give you definitive answers to the "will he..." and "what if..." questions, but I can say that I have 2 boys with ASD. Yes, it's bloody hard work. They are like chalk and cheese. One was fully continent by 8. The other is still doubly incontinent at 9. 11yo is extremely bright and extremely anxious. 9yo has learning difficulties but is a happy soul, unless I get his lunch wrong. 9yo is just beginning to talk and it's wonderful. He's doing well in local primary school, with support. 11yo is in a specialist school because he couldn't cope with mainstream.

The house is constantly a tip, but there are days when it's the best organised mess imaginable :o

Oh - they hate each other's guts. That's fun.

But they both give me lots of hugs. Whether you want them or not :)

My ds (7 almost 8) has Autism. He didn't start talking until he was 3 1/2 and he was discharged from SALT just before he was 6.
He is in Mainstream school, and not needing 1:1.
He is quite an anxious child. He is incredibly affectionate and so happy. He has friends, but he can find it hard to play with them, but he is also happy enough skipping around on his own, it took me a while to not feel heartbroken about him playing on his own at school.
I have ds2 (3) and ds1 is the best brother. He watches out for him, plays with him and is incredibly patient with him. In fact i think DS2 has helped DS1 learn how to play imaginatively...i see ds1 watching him :)

The only time he has hurt someone was at school in year R, a new child had started and they were only allowed a certain number of children in role play area...DS didn't know how to communicate this to the child (who was trying to join in) and being an unfamiliar child as well, DS bit him. Didn't mark him, and ds infact went and told the teacher himself.

He amazingly potty trained himself at 2 1/2 ... i wasn't ready for it if i'm honest!
He loves cuddles, tight ones, i think it's the pressure he likes. You can usually find him under a blanket...even on hot days.

It made me laugh, at the dentist yesterday ds2 was just skipping around the room and playing around, and ds1 said "Mum, why is he so bonkers and won't sit still".... i just said to him, if that had been you at that age you would have been running out of the door and long gone!! Now, he fidgets ALOT and hates waiting. But will sit in his seat (in a variety of positions).

It's always a worry how life is going to treat him, but he really is happy. Teachers at school just comment on how happy he is all the time.

This is my experience. We just take each day as it comes :)

We are also going through SALT with DS2, he is a big mixed bag who is confusing the professionals.

Thank you for your kind words which mean a lot to me and thanks so much for sharing your experiences. I guess I will come back to this thread a lot in later times and take a lot of comfort in your words. At the moment I'm probably in some kind of meltdown, crying since 4 o'clock in the morning...

I have a 6 and a half year old daughter who was diagnosed with autism when she was 5. She is clever, beautiful, toilet trained and a proper chatterbox but she didn't speak until she was 3. She attends a mainstream school and is taught in the mainstream class although she is taken out of class for additional lessons as they have a support unit within the school. With the right help in place, she has come on leaps and bounds. Don't get me wrong, she has her struggles and life isn't perfect but she is a happy little girl.

OP I'm in the same boat, DS is 26 months and has never gestured or mimicked at all. He also has not words yet.

I just want you to know I am here for you and thanks for starting this thread as it has given me lots of info I need too.

I always seem to wake at 3am panicking, there isn't much obvious support for us from anywhere at this stage, so we have to look out for each other.

N xxxx

Hi OP, another autistic person here. I'm a national adviser on autism, as well. With a DS who is autistic and has other disabilities too - and who has been working in a school as a member of teaching staff. I have several hundred autistic friends and colleagues across the world, and am so proud of knowing each and every one of them....whether they are verbal or not...living independently or not (I can't)...etc. Plenty of research showing our strengths as well as our challenges. For example we tend to be more honest. More fair. More keen on social justice work. More accurate.

Our brains are differently-wired, and we need to be careful of avoiding too much social stuff and too much sensory stuff. If we can do that, we can make great progress. If we're bombarded with noise and fluorescent lighting and perfumes and socialisation, our brain wiring does a good job of overheating. Then it either goes a bit peculiar for a while ("meltdown) or shuts off our ability to interact ("shutdown"). About an hour and a half later, it reboots. It's a generalisation, but that's what we reckon is happening. Many of us self-regulate our brains using repetitive tasks and movements. They have a real purpose, though they can look odd. Oh, and we can't see face expressions clearly etc, so people need to use words that mean what they say. Just looking sad won't work.
With the right support and enablement, we can live rewarding lives and give back so much love and cheer.
It's a different path you've found yourself on, and no wonder you are shocked. But it's a path that is full of promise, with the right help.

insanity Goodness what wonderful progress! Gives me a lot of hope .

OP and Auntynan - I did that waking up early thing for weeks. I would wake up at around 2 or 3am with a horrible feeling of fear and panic, go next door and sit and Google about autism until it was morning. The Googling made me even more panicky.

Waking so early is a very strong indicator of anxiety-related depression - and of course the sleep deprivation makes the depression worse.

I would strongly advise going to see your GP for yourselves about getting some support (whether it's anti-depressants, cognitive behavioural therapy, counselling or whatever).

If I could go back in time to when I was in your position, I would stop trying to find out everything I could about autism and ways to help DS, pause, and just take a few weeks to try to get yourselves to a better place emotionally. That must be your priority. When you are feeling a little better, that is the time to start taking practical steps to put things in place for your DC. You are the most important thing to your DCs and will be their greatest champion. So your priority for now must be getting yourselves to a better place emotionally. That is the best thing you can do for your DCs right now. All the very best to both of you.

I also want to reassure you although I know how scary it is. My 3.5 year old ASD son started talking about 6 weeks ago and now won't stop. he had extreme symptoms but seems to be getting better. he points now, makes choices, has been abroad twice with no issues except a pathalogical refusal to drink .I won't lie we are still controlled by it to a large extent but once you fully accept it and embrace it, things get much easier and everyone is happier.

OP, he has feelings for you. He just doesn't demonstrate it in a way you can easily understand.

Would it help to strip it back to what feelings are? When you take the high-faluting poetic language away, love is a variant of I like being with mummy better than that strange man on the bus. The names change, that's all! He's not a rock, he's just your baby who can't express himself yet.

My daughter used to be very difficult to handle, and would sometimes have aggressive outbursts. She wasn't out of the buggy until 5.5 years. Not day and night dry until 7, but at 18 she is the most affectionate, loving, intelligent and rewarding child. When I hear stories of what other people's children do at this age, I am so grateful. She is remarkably considerate and well-behaved. I am very, very proud of her.

My DS2 is nearly 18 now, From non verbal (til 4) flappy , utterly passive little fellow with his only interest being lining up crayons, to a non stop chatterbox, who is kind and caring, gives me hugs every day (generally at the most daft times like while I'm cooking!) and everyone loves him.

It's not always been easy, he has learning difficulties too andnhe went through special school, and the adult future is uncertain.. he will never be fully independent. But he's happy, he has friends and a carefully constructed social life, goes to Special Needs clubs, and has learned to use the local bus!

I'd be lying if I said I didn't still have moments of intense grief for 'what should have been' as I can sometimes see how he might have been like his very able siblings in another universe. And the future IS scary. But he has brought far far more to our lives than his autism has taken away.

I spent the first couple of years sobbing, and I so wish I could go back to my early days of dx and tell myself that it would be ok... because it really is. It's different, but it's ok.

take one day at a time.

there is no point jumping ahead. he wont suddenly become a severely ASD adult...

my ds has ASd cannot speak verbally but communicates well at his level using an ipad running a speech app. there are many ways to communicate other than speech. dont give up.

Yes, agree totally with Medusa. There were really hard times. Getting called in by the (mainstream) school: 'LittleLuna is very intelligent but so badly behaved...etc..' Although I am not sure that I grieved who she 'might have been' because she is such a fantastic person. I can't help but thank God for all her special gifts and wonderful qualities. As a Mother, who could help but feel blessed with a child who is grateful for all you give them, who is so creative, so loving, who never forgets your birthday etc.

I will say that good education is so important, though. Our turning point with her in mainstream was when her Y4 class was taken over by a man who was so practical and sensible, and, probably vitally, had such a dry sense of humour, that he was able to integrate her into the class really well, handling the challenging behaviour whilst also supporting her to develop what she was very good at (literacy). I will be eternally grateful to this teacher.

Medusa I remember you wrote a lovely message on a very similar thread I started (under a different name) when I was going through the same thing a year or so ago .

All my family are autistic, we are just normal people, some have jobs, some don't. Autism is a big deal because the educational system excludes us, so we end up traumatised and with low self esteem . obviously, I am speaking for those without learning difficulties.

As others have said, all children on the spectrum are individuals. I think if there is one thing I have learned it is to live in the now. If today is a good day then that is enough. Enjoy it. There will be bad days but frankly that comes with being a parent. I have two other NT children and they are hard in different ways!

And don't listen to other people or Google, just have confidence in your knowledge of your child. Over the years people will tell you all sorts of random things. I have had one school tell me that my child was mad (yes really) and another tell me that he had bipolar. I have cultivated the charming smile and the "thank you so much for your concern, I really appreciate it", whilst thinking in my head "and you can F**K right off".

My oldest DS is 17 and autistic and was also diagnosed very early. He walked and spoke and was toilet trained all at normal times. He attends a special school because he finds social situations stressful and the small classes suit him much better.

He is a fab young man. He is caring and hugs me every day. He is very protective of me and very helpful. He will do any jobs around the house and garden or go to the supermarket. He is always willing to go to the cinema or for a walk. He is a bit of a loner and does not really feel the need for friends so all his friends are on the spectrum and their idea of hanging out is to play the same computer game at the same time. There are a lot worse things IMO. He has passed several GCSEs.

Personally I think that although autism brings its difficulties it also has benefits. He is very easy to be with as he does not play emotional games or do things to wind people up. When he eventually gets a girlfriend she can be sure he would never cheat on her because that is simply not in his makeup. If he met someone else he liked more he would just tell her! I wish more people had these characteristics. He has that laser focus on screens and spatial activities which seems to go hand in hand with autism and is also very artistic. He is also fabulously healthy and I can count on one hand the number of times in his life that he has been ill.

The next stage is obviously university/getting a job of some sort. He has already said that he wants to work alone. I am not sure what he will be doing but I am sure we will work something out. I have never seen him as disabled because he is not, he is his own person with his own preferences as we all are.

I will never forget what the doctors told us at ds' diagnosis.. "play on his strengths and work on his weaknesses"

My ds aged 12 is the most talented artist I've known!

He struggles with laces, buttons etc, were working on it:)

Never ever give up hope.