Autism

[Leena478]

This is a follow up post to a previous post I had written about my boy. He is now 16.5 months. For months and months I have been going back and forward between is he isin't he autistic. I must say it has been the toughest few months of my life. I am at the stage now where I have realized that he is definately on the spectrum. We are awaiting a follow up appointment with the paediatrician in 2 months and he will be referred for a multidisciplinary assessment for diagnosis at this stage. In a way it is a relief to not be desperately clutching at every thing he does to try and prove to myself that he couldin't possibly be autistic. I feel like my view has changed a bit and I am now starting to see and appreciate his strengths rather than his areas of weakness which is refreshing in a way. I'm not sure what i am after here - maybe some guidance as to how things may pan out for him? Severity? Will he ever be independent and be able to have a REAL conversation with me? Will he be happy?will he have friends? The unknown is killing me. I know noone can tell me for sure. I know that. But I am after any thoughts/guidance/experience with your own children. What were they like at a similar age and how have they progressed? I posted in my previous post about how he went silent for a few weeks after turning 12 months. His babbling/vocal output never returned to the same level after this period. His eye contact has stayed dramatically reduced but depending on the time of the day and what we are doing he can have fantastic eye contact. He can spontaneousely use around 10 animal sounds and says a few sounds like broombroom when playing with cars. He understands most of what we say and can follow instructions such as go and get your shoes, sit down, pull your pants up, take your socks off etc etc without gestures. He is very passive and quiet, he has never had a tantrum lasting more than 10 seconds or so. He nods his head yes or shakes his head no to questions. He is very good at pointing to things he wants and will become very LOUD with his babbling when wanting something but in terms of pointing to share something with me this is very minimal. It DOES happen, but very rarely. He has quite limited play ideas and appears to get quite fixated on certain toys and doing the same action over and over again (something I would have previously shown him) ie put the little person in the tractor - attach the trailer and drive it off. He has very limited play ideas on his own and gets fixated on for example driving the train through the tunnel over and over and over again for 20 minutes or so. He has started obsessively picking up sticks when we are outside wherever we are and has started to line up his toys (this is very recent) maybe 4 cars in a line and then move on to something else. It is definately not part of a game for example. He is TRYING to say a few words however.... he uses the same sound for multiple words (eg) ba is for bus, ball, bubbles, bath, ha is for hat, hot, help etc. He has also started saying da for duck. He uses about 10 makaton signs consistently. He really seems to understand what is going on throughout the day like this morning I said shall we go out to the supermarket and he nodded and went and got me two pairs of shoes and put them at my feet and I said where's mummy's jacket and he went and pointed to it. I know he has so many positive skills I really do. I am just struggling with some aspects like when we get home now he really does not react with happiness or excitement at all. When I get him up from his cot he looks straight ahead or randomly points at the light or something on the ground. He used to show happiness and excitement when I would go into him in the morning or after nap time. I don't understand why this has changed. Is he less happy or is it just his outward expression of this? I feel so confused. I know he loves me. I do - but this has been quite a tough one to adjust to. He is quite good at imitating actions and sounds and loves joining in with all sorts of games peekaboo row row your boat patty cake etc although it can be tough to keep his engagement but he does enjoy them. I am so sorry for this long ramble. Any thoughts/advice/insight at all?

Sorry OP I'm not an expert but he sounds....like a completely "normal" (neurotypical) toddler. What are your concerns exactly, and why has he been referred? I'm not at all minimising, it's just for 16 months none of this sounds particularly off at all?

@Miriam101 I think it is a combination of everything put together. Even when I read my message again it perhaps doesn't fully convey the difficulties with his communication. He is almost silent - all day. No babbling or noise at all really unless I specifically engage him in something and even then it is limited to perhaps copying a few noises I make ie beep beep for the truck or neigh for the horse. Very poor eye contact. Very passive. He's almost too 'easy' if that makes sense? He has very flat affect (facial expressions) a lot of the time and quite often will wander around the house making an humming noise to himself almost as if he just can't think of what to do. He also gets very fixated on tiny details like the tiny domes on his clothing or a screw in the corner of a mirror (with no interest in actually looking at our reflections in the mirror). I think the huge flag for me was when I started to watch a little closer is that yes he DOES point but this is mostly when he wants something. As I said it is rare for him to point just to share something with me. Very rare. We visited a friend and her boy of the same age the other day and the second sat down he was babbling at me showing me his toys engaging with me in that moment more than my child does on a day to day basis. It blew my mind.

@Miriam101 also the decline in his babbling and social skills (eye contact, backwards and forwards engagement) at 12 months was the biggest thing. Those things have never gone back to the level they were at. I was watching old videos the other day crying as he was so engaged and happy in them.... he often now has this sort of.... blank.... faraway look on his face?

I didn't want to read and run. I can imagine you must be very worried. Hes very young for anyone to decide anything for certain.

OK, I think I understand a little better now- obviously it's hard trying to get the full picture on the internet :-) I do still think he sounds like he's doing pretty well- neither of mine were saying much at all at 16 months but were still within milestones by the time they were 18 months and really blossomed between then and 2. The really important thing is that you say his comprehension is strong; that's great and I'm sure in time his outward communication will catch up too.

I do however understand the anxiety you talk about as I've worried too about my DD and still sometimes swing back and forth between "there's an issue here" and "no there isn't - it's all in your head". A therapist I spoke to described it as just having to "tolerate the uncertainty" of parenthood, which is something I struggle with, I guess.

Have you posted this in the Special Needs section on Mumsnet, as there are some very knowledgable people there who might be able to answer your questions properly.

Hello

i have two children (now 15 and 17) both of who have autism.

at 16.5 months I could tell something was different about my eldest. He never spoke, he didn’t babble or put things in his mouth like your average infant. The youngest we never knew until he was five.

id be heartened by the fact that your child is pointing and trying to engage you - it was always one question the paediatricians asked and neither of mine ever pointed.

I am going to be honest - 16.5 months is very young for a diagnosis. I would suggest that you enjoy your little one, do lots of interactive things with him (you are a very attentive mum). You could model play and what I did with my eldest who struggled with play is to allow him free time without interference from me so to allow him to find his own play and interests.

from someone who has been through this, it’s easy for me to say, but please don’t worry. If your child does hhave autism there are lots of resources and guidance out there - a lot of what us parents with autistic children do is good for children in general.

personally I try not to worry about the future - all I can do is be the best mum on the day. It is very hard to give a prognosis.

@Ilovellamasandpenguins thankyou for your comment. How are your children / teenagers doing now? I do realize 16.5 months is very young. We are in NZ and they will diagnose if it is evident to the multidisciplinary team. The private speech language therapist we are seeing can definately see it and thinks he will get the diagnosis in a few months. I think the complete lack of babbling is a huge one for me. He definately does point I just feel the level is so so low compared to a NT child. Like i say pointing to things he wants is perfect but in terms of just generally to share joy or interests i would say maybe once a day and it is very half hearted. Same with showing me things he will occasionally wander up to me and hand me a toy but then just sort of wander off. The worry about the future is the thing killing me. Our day to day lives are very very happy at the moment. We have fun and a lot of laughs. I feel like when you have a child you have a general idea of how things will pan out and I feel like that's gone you know. Thankyou for your words.

Hi! Just wanted to pop in and just provide a positive perspective as an autistic adult. If it does turn out that your son has autism it isn't the end of the world :) Depending on what his support needs are there's no reason he can't live a 'normal' life. I, for example, have a degree and work as a graphic designer. I'm married and have a small son.

Wishing you and your boy every happiness :)

Will he be happy?will he have friends?

This stands out miles for me. It's important if your child is autistic that you lose the same sea of where you think they should be and what you think they should be doing. I'm autistic and having friends and keeping up appearances as a child seriously affected me mentally. All I needed was someone to tell me it was ok to be different. To be me. To spend time alone. I don't have friends now and my life is much easier.

Hello - me again

my two boys are very different - one is super clever (the one that didn’t babble or reach any milestones when he ‘should’) and going to study physics at university, he doesn’t like to be touched, doesn’t have conversations as such (just talks to me about physics) he is well regarded at school by peers and teachers - we did put effort and structure and scaffolding around him and he is blossoming.

my youngest isn’t as clever academically - he is in a school that suits him and he is getting ready for a vocational life.

the future scares me for both of them, but my youngest more as he is more vulnerable - but I’m afraid to say I don’t dwell on it as I do get upset about it. My friends with children without autism, worry about things like drugs, getting in with the wrong crowd etc - I think worry is part of every day parenting.

what I can say is that looking back we have done everything we can to provide them with education in the right settings and support at home that allows for their autism. One thing we did get right (and we got a lot wrong) was get some cats - my two show more empathy for the cats than they do for us.

to echo the previous two posters, I have autism too, am married and have cats.

you never know what is going to happen in the future - day at a time.

Hope it all goes well - early intervention and identification is key - you are early for a diagnosis so time is on your side.

My lo is on the asd spectrum. I had concerns from very young.

It is very difficult for anyone to say yes or no to all you have asked.

But, have you had their hearing tested by an audiologist not the GP or hv with a rattle? My child also has hearing loss that was not picked up.

At 16.5 months, I would genuinely think that noone will give a diagnosis. But by the time you wait for referrals to mdt etc he will be older anyway so the diagnosis process will then be more likely to happen (in my area, even though my lo was under paeds from birth, they will not pursue any diagnosis until school age/4).

The regression in speech/babbling happened to us, though wasn't extensive before.

The obsessions etc have always been there, but are easier to manage for me than I have seen others have.

Emotional mood swings/tantrums etc are always hard as each child is so different. My lo has what I count as typical tantrums any child would have and some that are most definitely not.

There could be delays "just going on" such as gdd, it could be their personality, it could be asd, noone can say. But as hard as it is, I'd try not to focus on this and focus more on giving opportunities to have good well rounded development opportunities.

Do you take him to groups etc? Does he go to nursery?

@Miriam101 yes also posted on the special needs section but no replies whatsoever over there!:( although know my post is a bit long/rambly/difficult to answer. But yes the excellent receptive language is definately a positive for him. We have doing lots of fun play based floortime stuff over the past few months and working a lot with a SLP on joint engagement and imitation etc so I am just so hopeful that this will all come along and support his language development regardless of diagnosis. It is very hard... the uncertainty... at the moment i almost feel like hes slowly slowly pulling away /withdrawing and I'm desperately holding on trying to pull him back .. sounds a bit dramatic but it does feel that way sometimes. Noone else really seems to have noticed family wise as it seems to have happened so gradually but I look back at old videos and the difference astounds me 😪

@TheBirdintheCave thankyou. I would be over the moon with happiness if he could achieve that. Independence and a wee family and a few good friends.:) my head does really go to absolute worst case scenario and I'm finding it hard to drag myself back from that.

My 5 yo has autism and was diagnosed at age 3. They don't like to diagnose any earlier than that here in the UK (although tbh the NHS tries to do as little as possible for autistic kiddos most of the time, so we ended up going private). He sounds very much like your DC at 16.5 months - although every autistic person is different.

Positives: he's the happiest child I have ever seen, he loves life, his toy vehicles, his home and family. His special interests give him immense joy. On a good day with a fair wind, he can read like an 8 year old. He's extremely articulate despite being a non-verbal toddler. His speech kicked in when he realised he could use words to get more access to his limited interests.

Negatives: he doesn't sleep, and has never slept. He eats 5 things and they are all beige. He has been thrown out of a lovely school for behaviour (yes, in his reception year). He is violent to other children and occasionally to us. He has zero empathy and no friends - although there are a few girls at his former school who treat him like a pet/simpleton.

I'm not going to lie, it's been an absolute nightmare and the fear of another child with autism prevented me having the second child I always hoped for. We now suspect DS also has ADHD and dyspraxia and are back on the diagnostic rollercoaster again. I am on antidepressants and have separated from my DH, but neither of us can cope with DS alone.

I was advised to go on parenting courses which tried to teach me about how great autism was - in one class I was bleeding from one of DS' bites. It felt like gaslighting tbh.

I sincerely hope your DS has a smoother path, but that's the warts-and-all version. You will find plenty of us in a similar position on the SEN board.

Commenting so I can come back to you

Hello,

My DS (13) is autistic. He was diagnosed at 3. We went on to have 3 more children, DD was born when DS was 14 months old. Not for everyone, but she helped him so much, walking, talking. They are also good friends, always have been and she understands him so much.

DS was in daily therapy from the age of 3 (speech, occupational etc) and mainstream school until aged 8. This was at my insistence, and I regret that. I should have chosen specialist school straight away.

What I found is having an autistic smaller child, everyone thinks that they are cute. And then, as children grow, the differences become more
Noticeable. He wasn't invited to parties, we were excluded from things as a family.

Now, he has a wide circle of friends. They are wonderful.

A crystal ball would be a wonderful tool, but it isn't realistic. However, following your gut instinct, pushing for support and early intervention is key. People will minimize, in an attempt to ease your fears. My own parents thought I was being overly anxious. But I knew from an early age that something was different.

Having a supportive determined parent is half the battle for our children.

Good luck!

@Leena478 hi how is your little boy doing?

Hey Leena, how is your baby doing? X

Hello

I'm a mother and have autism myself - i did well at school and got good qualifications/ degree. i work as a nurse. I am married with 2 children. I struggle socially but this is internalised and outwardly i appear fine. My dad was also autistic - worked as a driver. my brother is autistic and works in the civil service and has a normal family life

I have a 2 yr old child who is clearly autistic - similar eye contact, no words etc as well as other concerns. He has developmental delays particularly around speech/ social skills. i'm not in any rush for a diagnosis however would be open to it down the line if nursery/ school want to take this route. if i felt prompt diagnosis would be hugely beneficial at any point, i would go private

i'm not at all worried about things. i managed fine in life and hopefully he will too. i intend to keep him within mainstream education settings as far as possible. Obviously i'll be aware of the areas he may struggle- communication / social skills and do what i can to facilitate his development where possible. i think respecting the special interests is important

@MamaLlama123 thanks for your comment. Gosh its been a while since I wrote this thread! Lovely to hear your story and it sounds like your little boy is incredibly lucky to have such an onto it understanding mummy. I have realized since my initial post that I had such a narrow view of what autism was and have since realized that I myself am autistic! I am also a nurse and have a wonderful family and life. There are also undiagnosed cases in my partners family. I have always had sensory issues especially with noise (competing noises mostly), bright lights and crowded places. I enjoy socializing in small groups but get early overwhelmed/overstimulated and require a lot of down time afterwards. I think my traits have come to the fore alot more since having children as obviously I have less time to decompress and I think also the stress of the past few years. My little boy is now 3.3 and the light of my life. He does not yet have an official diagnosis but I do plan to go the private route if it is looking like a diagnosis will be beneficial for school. He is the smartest little cookie, has completely caught up speech wise and has the most wonderful wee brain. I love him and I love the way he sees the world. He is the most gentle soul and the kindest friend. The main thing he struggles with is some social anxiety and settling into new places / joining in with playing and other children but does amazing with more structured activities or small playdates with just a few other children. He is incredibly sensitive and really overthinks when something happens at daycare like another child pusheshim or something so I do spend a lot of time talking through these situations with him and talking about he can manage them etc. He is quite sensory seeking so lotsof running jumping spinning etc etc but also hates loud nooseslike hand driers etc etc but we just work with him. He did have a period of lptsof meltdowns and i did find it hard sometimes not really knowing why but he is amazng at explaining things go me now so i feel i can help him so much better. I structure our days so we just do like one activity in the morning and generally have doe time in the afternoon but then that suits me fine as i also get peopled out easily. When he is around family or close friends he is the funniest wee person in the world but does just struggle with new people and situations but I could never have imagined when I had all the worries when he was a baby how things would turn out and I'm so so proud of him. We now have a 6 month old who i believe is showing signs already (I know people say you can't tell this early) but I just know - reduced eye contact and babbling, flat facial affect, constantly twirling hands and feet etc etc. I do feel worried but not as scared as last time - I know we will all be ok and the boys already have the most beautiful relationship. Sorry this is sort of a reply to your comment and also a general update to anyone else who may be reading. I truly believe my boy will have a wonderful life with the love and support of his family and be independent and have his own family one day. He may not ever be the life of the party but that's fine lol. I love him to bits.

I should add speech wise he was totally non verbal until he was two and then had grommets inserted a few weeks after he turned 2 and was talking in full sentences within a few weeks it was madness. It was all in there the whole time! We taught him Makaton which saved us communication wise in that interim period to be honest and I will absolutely be doing it again this time. Now he talks rings around me and I do wonder if maybe one day he will be a lawyer 🤣. Happy to answer any questions for anyone in a similar boat. I remember the worry so well x

I feel your pain. My son learnt about twenty words and then, instead of learning more and using them, he lost them. He didn't play with other children. He lay on the floor for hours, watching the shadows. In so many ways he was a content child but I used to sob for hours, imagining a life where he would always be different and lonely.

I want to reassure you. Today, my son is thirteen. He is at a top grammar school and has a life long friend who shares his interests. He runs his own small business - a hobby/obsession we encouraged. He knows exactly what he wants to do in life and he believes in himself. There are many things that are a struggle and I have worked around the clock to get him the diagnoses, tutors and interventions that were needed. It hasn't been the experience of parenthood that I expected. But he is happy and I wouldn't change anything about him. As much as autism is a scary word, it is also a super power. My son is an old soul, a beautiful spirit and he doesn't have a malicious bone in his body.

I wish I could go back to myself of ten years ago and say, "It's ok. It all works out in the end." I can't do that but I can say it to you instead.

Don't panic.

Hi Leena

your concerns about your sons future, I’d he has been diagnosed with autism, could have been written by me 10 years ago when my daughter was diagnosed as well. 10 years in and I can tell you every situation is different, but having traveled the road a bit further than you, you will be okay and so will your son. You will have to fight for him and for yourself; but you will come to a place of peace and understanding. I can’t say your son will be able to do anything for certain- but I can tell you I’ve seen so many children who were thought hopeless, who now live independent (because their parents worked towards that!) and have happy lives. My girl will be one of them.

The grief may never go, but it too will travel with you and some days are great and other times not soo much. But take courage that many of us are here along the way enduring similar situations. I love other parents of special needs children because we get it. We don’t sweat the small stuff. And we don’t have to explain. Hang in there and allow yourself the space and time to wrap your head around this. Reach out to sos sen and find charities for special needs families so you can find some support. Lots of love