New and confused

I hope I don’t offend anyone I apologise now if I do.

My partners got 3 children with his ex partner and the 2 eldest have recently been diagnosed with autism. He’s struggling to cope and I have a 17 month old son with him who doesn’t hold his own bottle or talk apart from row row and it might be normal but I’m worried that my son might have autism to I read stuff online and it scares me feel like I can’t talk to anyone. 

His children in order of gender are:

boy- 7

boy-6

girl-3

boy-17 months 

what’s the likelyhood of our son having autism and where do I go from here?

thanks in advance 

  • Lots of autistic people have blue badges. So do lots of other people. 

    I never said that you didn't get supporting evidence from doctors for pip (common sense)  merely that pip itself is not a "medical assessment"  it is a "benefits assessment " and what you described is MOST people's struggle to prove what doctors (medical professional)say about your (or in your case your sons) conditions and how they affect you to a pip assessor (specialist benefits advisor) who generally reports differently as they are not doctors. Thus meaning a pip score is not a medical gauge of how disabled you are. 

    New blue badge rules coming in

    • cannot undertake a journey without there being a risk of serious harm to their health or safety or that of any other person (such as young children with autism)
    • cannot undertake a journey without it causing them very considerable psychological distress
    • have very considerable difficulty when walking (both the physical act and experience of walking)

    Not that anyone even mentioned blue badges but still. 

    It's not a competition, you used your sons pip score to try and validate your point over someone else's, who questioned you due to your own wording and pointed out that practice is different now. 

    Could I also point out that although lack of trying to feed as a baby has been documented as possible indication of severe learning difficulties (what you called handicapped)  this is not widely used as a gauge early feeding problems (within first week)  are more likely caused by blood sugars, infection, cleft palate and many others.

  • The fact that he plays to some degree with his brothers is a good sign, remember they must be enormous to him. I don't remember playing with my younger brother when young, except in passing.

    Flicking fingers in front of his eyes to get visual stimulation, but all children do it, but not to the same degree if it noticeably often.

    Shattering Clay plant pots on a path in the garden to get noise and visual stimulus as the parts fly apart. He is known to do the same with egg from the Fridge on the floor. (Not so often now) and crockery a stress relief to a climax of stressful behavior, then calm.

    Insisting on getting dressed in a certain order, sometimes wanting inappropriate clothing like wearing two pairs of pants. and outdoor clothes inside the home. 

    As a child liking thing coming at his face like toy trains on a track, with his head on the track, visual stimulation..

    Spinning round and round to get giddy and falling down, with a danger of hitting his head.

    Liking the outside breeze on his bare skin, obviously when it's sunny. 

    liking perhaps colder than usual splashes in the bath, when older taking cold showers that seem's odd behavior.

    Having to wear a nappy when he is older.

    Liking repetition, repetition, repetition etc.of something he can control, such as you reading a story. maybe sounds, voice or music on a loop when older. 

    Most Children will do unusual things like all the above, That is why Doctors and professionals will not commit themselves until a child is about 3.5 years

    But letting your doctor know your worries may get you help with all of the burden you appear to be undertaking.

    .

  • IN RELATION TO YOUR STATEMENT A PIP SCORE HAS NO MEDICAL BASIS.

    While the PIP investigation decides on a persons level of disability with a score depending on the disabled persons ability in completing tasks ie a score as to how that person is disabled with 12 points being the maximum needed for maximum disability benefit, In order to get a Blue badge the disabled persons ability in regards to mobility is assessed. with again a further score of 12 points  needed in order to get  maximum mobility allowance and with it a Blue Badge to enable the disabled person to park in designated spaces. To get mobility allowance the disability has to be a physical disability. This Benefit has to be assessed by a medically qualified person.

    In fact I requested in the case of my son, he be examined by a SPECIALIST DOCTOR of neurology, because his original diagnosis of autism at the age of 3.5 years was made by Dr Rosenbloom a renowned pediatric neurologist at the ALDERHAY HOSPITAL with a team of other specialists.  In the time  available they could not comply, but had another qualified person that I believed reasonable at the time (now buried in a full box file). 

    With this original diagnosis of autism I applied for an Orange Badge in relation to parking and was rejected, Then followed Many years of going to Tribunals, getting, rejected, appeals to a Court, More Tribunals In the end I finally got it to a MEDICAL APPEAL TRIBUNAL  where he was examined by SPECIALIST DOCTORS and where he was running round the walls almost like Billy Wizz.  Where he was awarded maximum Mobility Benefit, initially for one year, it has been continuous since then.  I was able to show his disability was Physical and not Mental, as had been presumed to deny him and others a benefit.    

  • Pip score is purely for benefits and has no medical basis as it is not assessed by doctors, please don't confuse the two. Also fragile x test has nothing to do with autism, it merely has some similar attributes that could mean misdiagnosis hence blood test for fragile x syndrome. Your first description of your sons "feeding"  you described as force feeding. Most people would think the worst at that description. Although if he was that intolerant I would ask why you didn't have assessment or him be given a feeding tube.

    Lastly handicapped is not really an acceptable phrase these days I know it used to be

  • Hi,

    As I said in previous post 17 months is still young especially for social skills! It is also not unusual to be picky eaters at that age. 

    Is he having unusual reactions to things? Ie struggling with sensory problems touch, taste, smell or sound? Does he acknowledge you when you enter/leave room (I no he can't speak but does he notice) does he have any kind of repetitive behaviour/movement? Does he get very upset if you change his routine? Does he give eye contact? 

    If you are noticing alot of these types of behaviour then you really need to talk to health visitor. If not keep an eye on his behaviour keep a record this can help for referral. But 17 months is young he may just be going at his own pace! 

    If concerned talk to doctors or health visitor, please don't be put off by users that choose words such as handicapped.

  • It should read but extremely physically active, he was thin because he did not want to eat. 

  • Holding a child's hands or arms by me, to prevent any carefully offered nourishment by his mother in 6ml teaspoons one at a time to a maximum at a time 5 tea spoons does not correspond the Force Feeding Regime you seem to relate to. When we have employed carers the Local council have insisted for their Health and Safety that they were shown Restraint Techniques at the local Mental Health you seem imply a knowledge of. My son has never had such restraint to my knowledge by carers, but his eventual carers will also be trained likewise, by then I will be dead, it his eventual care I dread.

    While I consider that you are obviously on the autistric SPECTRUM. You obviously have absolutely no experience of coping with another person at the extreme end of a SPECTRUM of handicaps to yourself. For a start My son handicap is recognised by HMG with a PIP SCORE of 47. What is your PIP Score of Handicap? 

    Read my second and last two paragraphs.

    The latest comment from confusedmun18 give further reason to seek her doctors opinion, and ask for a blood test.

    My son was very thin obviously by extremely physically active  He could run away, and climb to the top of a small tree standing on the top like a bird.

  • Hi all my son does eat but only what he wants and he doesn’t eat a lot. I’m not jumping to conclusions of autism I came on here for support and to find out if anyone would help to tell me some signs to look out for. 

    When he plays it’s always on his own when he’s at baby group he never plays with anyone he will give them toys but then he will go off on his own and it’s like that when he plays with his brothers. 

  • Hey :) 

    Some children take longer to pick up speech than others. I wouldn't jump straight to being concerned about autism - it's best to keep tabs with the GP to assess the child's development goalsx

    Much love <3

  • In response to NAS38972 .

    The Concerned mother did not highlight they were not feeding,

    she actually said  “I have a 17 month old son with him who doesn’t HOLD his own bottle or talk apart from row row”.

    Holding a bottle and not feeding are not in any way the same,

    he may well like being fed as most young children do, it doesn’t make him more likely to be autistic!

    As said by many understanding and loving parents  here don’t start worrying your son will have to be held down and force fed, that will never be done.

    Times have changed since 1983 and even then I cannot imagine a medical professional advising that as a way to give nourishment to a young child!

    ” and then I was having to hold him still enough while he was being FORCE fed”.

    On who’s advice was this a right way forward?

    what did the professional people do to find out why he vomited?

    What was the outcome of medical tests?

    What advice was sought and what was given?

    I wish you well NAS38972 and I hope your son is living a life with much love and understanding.

  • Hi there can I say the first two who gave advice are the ones to take notice of as there is nothing to worry about.

    Let your health visitor know of your concerns and if you are really worried then talk to your GP as well. 

    The NAS has various good resources which hopefully someone on here will post links to for you. I am not good at such things.

    May I say that the response from NAS38972, is a rather extreme account and happened many years ago.

    Things are totally different now and you and your child will have plenty of help and support should your child be on the autistic spectrum.

    please don’t worry to much, I am autistic and here I am reassuring you and others it is a difference but it isn’t wrong or something that’s broken and needs mending. It’s a different way of experiencing the world we live in. 

    Keep loving your child and as you are doing already ask questions and try to see into the many varied lives of being on a varied spectrum.

    Big hugs from me and look after yourself as well.

  • As the Parent of my son now 36 who is severely and profoundly autistic.  His first sounds were "Caw Caw" copying the Crows. He did not speak any sounds that were imitative to words such as sounds mmm and a couple of others.. etc as a precursor to speech sounds until he was probably 3 years old, This was our first thought that their might be a real problem and we started to seek help, because by then we had been gradually getting at our wits end so slowly that we did not realise it was happening with the problems that had occurred since his birth and were so obvious in retrospect. Starting When I had to supervise and record his actual precise intake of feeding quantities from day 8 as he was refusing food this included suckling in the hospital and was, and still is very  distressing for my wife.  This as I later read was an obvious symptom of a mental handicap.. Had I not done so he would have died as a graph of his weight was a straight line to zero in a week or so. 

    We had been taking it for granted that he was like our other 5 older children who are not autistic and were making sounds Mum Mum first as I remember.  We did not start to get worried until later with our youngest as we knew nothing about autism.  

    The only food that my son would tolerate was SMA Gold for the first 18 months of life. and he gained weight at the rate or 6kg to 1kg. any thing else was vomited back after the 5th teaspoon, and then I was having to hold him still enough while he was being force  fed. Such was his rejection of food. we have had problem all his life of him vomiting up food he has just eaten as if it was a trigger for him to vomit. It has been a lifelong problem, today it is extensive excessive drinking of fluids. This we are told is a result of his medication and started only when he was 26,  as he was becoming more and more violent. Most of the time he is perfect, but he can and obsessively want to attack you. You just have to be wary.

    The reasons for my son  being autistic, is in our case he was deprived of oxygen at birth. There is a test we had done to see if he had what is referred to as fragile X syndrome which is indicative of an heredity condition. This came back negative. Your doctor could organise such a test.

    I have mentioned feeding as you have highlighted this as a worry., you seem to imply he would take no nourishment unless you plugged it in.  Let your doctor know. It could be he just likes you feeding him. It gives him  Mum time.

  • Hi

    17 months is still young for speech! My youngest is also 17 months and has limited speech he also won't hold his bottle I am not concerned he is autistic. My 7 year old daughter was slow to start speaking now she won't shut up! 

    If those are your only concerns then I would not worry. I'm not a professional so can't give you a likelihood of if your son is or isn't if concerned talk to your health visitor. 

    If they share your concerns try and look for the positive not everything you read online is true. My 8year old daughter is currently awaiting assessment she is an amazing intelligent caring girl who makes me wish I could see the world the way she does. 

  • Hi, 

    I’m also new here and recently found out about my 6 year old that she is autistic. I think you need to have them check by doctors/specialist in order to get a proper diagnosis. That will help you to understand the situation better instead of making assumptions. It will be easier to look for proper help when you know what you are dealing with.