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1 year old - autistic??

steph86bradleysteph86bradley Member Posts: 3 Listener
edited September 2019 in Parents and carers
my son is nearly 1. He was Very behind at his 10 month check with regards to his social and communication skills. This has confirmed what I already feared - that he could be autistic. 
His symptoms are hand flapping and twirling, not responding, not pointing, not engaging in play with anyone else etc.
he has been a difficult baby for many reasons - not sleeping, crying a lot, not wanting to be laid down - to name a few.
the HV has told me there is nothing anyone will do until he is at least 2.
what do I do? 
Anyone else have these symptoms at such a young age? 
Help. I feel very sad and just want the best for my boy! 

Replies

  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    edited September 2019
    Hello @steph86bradley

    Welcome to the forum! 

    Have you contacted the NAS? Additionally you can find more information on autism on their website https://www.autism.org.uk/. Give them a call on 0808 800 4104 or use their online self enquiry form to contact the autism helpline. 
    Good luck. Keep us updated.

    What other signs of autism are you seeing? It may be helpful to jot down any observations on your phone (you can use the notes feature on your phone) or in a notebook. Do you have a appointment with a neurologist or not? If so, take a pen for note making and have a short list of questions to ask the specialist. Ask for explanations of any tests etc. Discuss your concerns with your family doctor and ask for a referral. 
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Welcome to the community @steph86bradley
    What did your Health Visitor say? All babies are so different and develop at different rates. My youngest didn't speak or walk till he was over 18 months old and then just got up one day and walked across the room and then started talking.

    I know it is so easy to feel worried and concerned when you feel your child isn't progressing at the same rate as other children, but it is worth you having a proper discussion with your Health Visitor and explaining how worried you feel.

    The National Autistic Society say:
    "Children can be diagnosed as autistic when they’re quite young, in some cases from the age of two." so I think your HV is correct in what she is saying there, but maybe she can offer you more support right now.
    Scope
    Senior online community officer
  • steph86bradleysteph86bradley Member Posts: 3 Listener
    Hi hi thank you both for your replies. This means a lot!
    He flaps his hands - recently started doing this.
    he twirls his hands and feet - he has done this since being able to sit up (about 5 months) and mostly occurs when he is in the high chair.
    he stiffens his arms and legs in front of him (lifting his legs off the ground so that he is just on his bum) and twirls his hands and feet. His face looks like he strains when he does this (before anyone suggests it, he isn’t constipated and not having a poo when he does this).
    he was babbling a month ago, now he just makes noises.
    he isn’t repeating any noise I make.
    he doesn’t respond to any one if u call his name, only when you make a high pitched sound he will look.
    he avoids looking at people. He will look around their face.
    he has started to bang his head in his high chair and car seat and even tho wall - when he gets the chance!
    he does however like peek a boo games and really laughs at this 😁.

    the HV said that she will come see me in a few weeks - to deal with my anxieties not to reassess my boy.

    i have made an apt at the GP next week.

    i have been in touch with the NAS, and they said that they will call me back.

    He starts nursery soon and so I have also made an apt to visit them before he starts. 
    So I have pretty much done everything I can at the moment but like anything these things take time I guess. 

    Thank you you for the advise. Will keep u posted x x 
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    It sounds like you are doing everything you can @steph86bradley Do keep us posted!

    You might also like to look through the posts in the Parents and Carers category here and connect with other mums. :)
    Scope
    Senior online community officer
  • exdvrexdvr Member Posts: 307 Pioneering

    Hi @steph86bradley......It is so distressing to hear about your situation as it turned the clock back over 20 years to the days when we were foster carers.  The baby we had placed with us straight out of the maternity hospital started to show signs exactly as you describe from about 5 months.    We were always left feeling fobbed off by the social services and doctors claiming that his development was just a bit slow but in our heart of hearts we knew that there was something definitely not right.    It was only after he reached 2 years of age and a planned adoption fell through because of behavioural problems that our concerns were taken seriously.  Eventually autism was diagnosed, sadly confirming our earliest fears.  He moved on from us to a more permanent foster placement where he stayed, loved by all, until puberty set in and the behaviour got worse including violence and temper issues, resulting in him being hospitalised until he was 18.  He now lives in sheltered supported accommodation and although still has issues is developing into a lovely young man who remembers so much about his past it is truly incredible.

    Please.....do not allow yourself to be fobbed off by others who obviously do not know your child as well as you do, and keep pushing for referrals and help and support.   I'm not normally a religious person but I do hope and pray that your situation isn't as bleak as I've painted.   Please keep us posted. 

    Best wishes.

    DLTBGYD

  • 1Newbridge1Newbridge Member Posts: 15 Connected
    Hi.
    our gorgeous Grandson is on the spectrum, he displayed similar symptoms at about the same age. 
    He had a fantastic child minder who really taught all of us techniques to help him . He is 6 now and high functioning in numbers, he is social , but loves his own company! We hug on his terms, he is a happy little chap. My daughter took similar steps and joined a mums support group, both her and my Grandson have formed many friendships there. We all worried how he would cope with school, but not for the first time he amazed us and gets on great. He has had a few issues eating school meals, as he only eats beige food, so switched to pack up. We have had amazing support from HV and GP as well as his school, hopefully he will continue to enjoy . Hope this helps as it can feel scary, get diagnosed and then access support for both of you. All the best.
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,568 Scope community team
    Welcome to the community @steph86bradley and thank you for sharing this with us. It sounds like you are doing a great job and accessing all the right things. Please do keep us updated. :)
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    Scope

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  • SeanchaiSeanchai Member Posts: 305 Pioneering
    edited September 2019
    Hi Steph ...my beautiful grandson ( 15 years old ) has severe autism . We knew from the start that things were not " normal" in his development . He had very dark eyes and looked blank . We would sometimes get a smile of him but at other times , just a blank look . It turned out that my grandson had heirchsprungs disease ( not connected with his autism ) and as a baby and young boy went through so much operations and hospitalisation for his heirchsprungs . He was not actually diagnosed with autism  until he was about four years old . He was sent to a normal school who had a class of children with disabilities ( including other children with autism ) 
    We went down to his school to see his head teacher as to his learning difficulties . When we arrived the children were all out playing ( children from all classes ) ...and there was our grandson standing at the edge of the playground watching all the others play various games ......that picture was so emotional for his mum ( our daughter) and of course for us as well . He used to come home and his behaviour was off the scale , he would wreck his room ...and the rest of the house as well , his mum tried to stop him but he was determined to wreck the house . The teachers could not believe he would possibly go into a rage and wreck the house as he was not like that at school ....i think he bottled everything up until he got home and in his own house and safety ....and then he would go crazy . God knows how my daughter and her older daughter coped ( our beautiful grand daughter who is so bright and intellegent ) she started university this month wanting to become a teacher . My daughter and grandaughter had so much to put up with , he would punch and kick ( just lash out ) . God knows how many tv ,s , computers and dvd's and beds  my daughter has replaced . Probably hundreds over the course of the last ten years . My grandson does not talk , no motor skills like writing or reading . ...but since he started high school , he very rarely has a ' melt down' it still happened but very rarely . He has awards for his numerical skills , his sign language is so good the headmistress gets him up on stage to sign while she tells the school anything in assembly . He cannot go anywhere on his own as he has no idea about the dangers of cars etc ( yet DLA took away his mobility allowance ) they also told my daughter that if she appeals their decision she might lose all her benefits . She has enough to worry about and i think their decision was sick . The reason i am telling you about our grandson is simply that my daughter ( and us) have had to fight for everything throughout his life .
    It sounds to me as though your doing everything required and you know you have to fight for everything . I hope things get better for children on the spectrum . My daughter has one night a fortnight respite ( which she had to fight for) our grandson  now has a school computer to help him communicate . He hates loud noises like grass cutting etc ...he still goes around the house slamming windows and doors shut when someone in the street is cutting grass or trimming hedges . He has ear defenders which he uses regularly plus he goes off in his own world watching various programmes on you tube ( mostly children programmes ) , but he listens in german or chinese 😯he can say an odd word but not always understandable . 
    Good luck Steph ...remember that you know best and some doctors etc forget that at times ...be ready for the fight ahead ... but i know you will cope ....i will remember you and your family in my prayers . Please keep us updated on how things go Steph .. If i can answer any of your questions over the coming years , i will do so to the best of my ability .
    God bless . 


  • steph86bradleysteph86bradley Member Posts: 3 Listener
    Hi all, just to give you an update as I can’t sleep due to my fear and upset. 
    Since my last post I had put my mind at rest for the last few months since there was very little I could do other than try to enjoy our son. We saw the Pediatrician yesterday (having booked the appointment 3 months ago) and unfortunately all my fears and anxieties about autism have come flying back. The doctor said that she could see our concerns, but of course he is still to young (now 16months).
    in terms of progression, he has stopped the hand twirling.
    He is still very hit and miss as to whether he will answer to his name.
    He is not affectionate in any way.
    He has no interest in other people - whether they visit us at home or we go somewhere like soft play etc. 
    He would prefer to play alone. He does repetitive play which mainly consists of him rolling his cars and putting them behind him. 
    No spoken words. He still babbles, but he has been doing this since 10 months. No change there - everything is da da da. 
    He does reach for things now but I wouldn’t say that he is pointing (he certainly doesn’t do it in order to get a response from us).
    The tantrums. OMG. He literally thrashes his body around. There is no controlling it or stopping it. I just put him on the floor and keep him safe. These can happen for no reason at all. Nothing has changed and yet he has this major tantrum. Even when he isn’t having a major tantrum, he is miserable/crying for most of the day. He cannot be soothed and often I don’t really know what fixes it - was it the bottle, tv, food? I literally try everything until he stops. 
    The Pediatrician is giving us another 7 months before we have another appointment. 
    I’m not sure how I can cope with the uncertainty or, to be honest, how I will cope with a diagnosis. I feel like I have lost something that I never had. 
    I guess these are the ‘easy’ days and I should make the most of him as, from what I have read, things are only going to get much worse as he gets bigger. 


  • Chloe_ScopeChloe_Scope Administrator Posts: 9,568 Scope community team
    Hi @steph86bradley, and thank you for taking the time to update us. It sounds like things have pretty difficult.

    Here is some information from that National Autistic Society about how you can manage behaviour and meltdowns. Obviously it won't all be relevant at the moment, but I hope it will give you some insight.

    I also am tagging our Autism adviser @SparkleSheffieldAutismAdvisors, to see if there is anything else they can help with. :)
    Community Partner
    Scope

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  • figspowartfigspowart Member Posts: 15 Connected
    Hi, I have two sons with autism, aged 25 and 18. Please take heart, although we have had a tough journey there's been a lot of fun and laughs along the way. My boys have taught me so much about love, resilience and perspective.
    Special needs parenting can be super tough and some days I think I am doing the worst job ever, but I am grateful for how my kids have helped me to grow into a stronger person with a bigger heart. All kids do this, but especially ours.
    I know you don't have a diagnosis yet, but hope this helps. It's a journey, all you can do is go along for the ride and try to enjoy the scenery as best you can x
  • sherrieosherrieo Member Posts: 4 Listener
    Hi. I'm new here but had to stop and say hello. I have had a nagging feeling about my little one since before she was one and I can relate to how hard it is feeling like everything you say is falling on deaf ears. When my little girl was 3 days old I had a health visitor out about my concerns she had jaundice and the health visitor brushed it off, the following day I took her to a gp who also said I was overreacting, the next day I took her to hospital and was rushed to NICU for 4 days of level 3 specialist care for severe jaundice. The moral of my story is, you are an expert in your child, doctors will never know your child like you do, not every case is text book. As an educator I believe in treating every child as an individual and I stopped to say if you believe there is something going on that needs attention don't stop until people listen. Don't let people cast doubts in your mind, listen to reason, learn from their experience but don't be fobbed off. I am now going through the same thing and she is nearly 7. I know I'm going to have to repeat myself time and time again until I'm heard, but it's what we do. Good luck, I hope you and your little one get the answers and support you are looking for.
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