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New to this waiting for more investigation on my 19 month old son

williamsmum2210

Hi Everyone

I am mum to William who is 19 months.  He is right at the beginning of being assessed for ASD.

Myself and my husband have had concerns about some of his behaviour, as have close family members.

William does not have any words yet, nor does he communicate with us in any way.  He does a lot of hand flapping, and occasional spinning (mostly whilst he is sitting or lying down) He has recently started to spin objects in his hands, like the remote control and my mobile phone.  He doesn’t show much interest in his or his older brothers toys (Harry is 3), instead he spends most of the day running up and down the house in the same direction and pattern.

He doesn't answer to his name very often, although he does occasionally, he has also recently started to bite himself on the forearm, not in frustration, just when he is sat down.  He hates going into shops, if I am walking him to the shops in the pram he is happy, but as soon as I enter a shop he goes crazy and starts screaming and going stiff.  Sometimes it gets so bad that I have no choice but to leave the shop.

We are having trouble with him at bed time too.  He has always been unsettled at night, we put this down to his constant ear infections.  He has recently been diagnosed with a milk intolerance, and after being off milk for about ten days, he was sleeping 12 hours a night.  He will go to bed awake for his nap in the afternoon, and settles just fine, he sleeps really heavily in the day, and I often have to wake him up because he is sleeping too long.  However at night we have a real fight with him.  If we put him to bed awake he is really unsettled, crying/screaming and up turns all of the bedding out of his cot, and even takes off his pyjamas.  We tend to bring him downstairs, as he disturbs his older brother.  We used to be able to rock him to sleep, but he fights this now, going stiff, arching his back, screaming and pushing us away.  We usually spend a couple of hours fighting with him until he finally falls asleep.

The health visitor has been out to see us today, and agreed that he needs some further investigation, so has referred us to a Paediatrician.

I just wanted to hear some other stories on peoples experience of diagnoses, such as length of time from start of investigation to diagnoses.  I was also interested to hear if all of the symptoms are black and white, or if there is a middle ground?  William can sometimes show all of the above mentioned behaviours, and be very vacant in his response.  Then yesterday when my dad came over, he was clearly pleased to see him, following him round etc.  Then minutes later he was off in his own world, running an identical pattern over the patio outside and flapping his hands.

I had an interesting experience yesterday.  William has a long history over the last 12 months of ENT problems, he has had 10 ear infections and 4 tonsillitis since last May.  He is under an ENT for this, but I ended up at the hospital with him early hours of yesterday, as he had been screaming terribly all night, and he was in a very bad way refusing food and drink etc.  Whilst I was in the waiting room I was sat opposite a lady with a teenage girl.  We got chatting as you do, and she was asking some strange questions about Williams likes eg what toys he likes and what does he like to play with.  She said that he reminded her of her own son at this age.  We got talking some more, and I said that I had concerns about his development, when I mentioned ASD, she seemed relieved and said that she hadn't wanted to say anything, but she has a 17 year old son who is Autistic, and had been watching William, and he reminded her of her son, in some of his actions and his lack of eye contact.

Me and my husband just don't know what to think about it all, some days we think he is fine, but then other days he shows signs of being a little bit different.  We realise and understand that a diagnoses is going to be a lengthy process, and also understand that health care professionals will be very reluctant to comment specifically on his behaviour, and confirm they think he has ASD.  That's why I thought it would be good to talk on here.

Thank you in advance for any response.

  • Out of interest, what  is wrong with your daughter's feet/joints?

  • Hi Laura

    My daughter was only diagnosed recently at the age of 13 however some of the things you mention, she did but we didn't spot it.  

    Taking her shopping was a nightmare, ok walking there and back, ok in some shops but others she'd scream so much I'd have to take her out.  She talked late and struggled with sleeping.  She was under a paeditrician for the first 3 yrs of her life because of her poor eating and failure to gain weight but no one ever picked up the signs because she was good at eye contact and always smiling.  They also never spotted a problem with her feet or the stiffness in her joints.  

    If I could wind the clock back, I'd be looking at every little thing and making notes as you are doing.  Hope the assessment goes ok. Ours was done by a paeditrician and a speech therapist asessment and it came back with a clear diagnosis.

  • Thank you so much Coogybear, we are definitely going to try some of those methods.  He loves sensory lights, so we have already discussed getting some sort of lighting for his bedroom.

    Funny you should mention it, but he LOVES doing round and round the garden.  He has been doing this a lot with my dad today!

    Thank you again for your advice, it is preiceless to us, and very kind of you to share your experiences.

    Lauraxxx

  • Hi williamsmum2210,

      When my boys were younger they displayed a variety of behaviours, some of which appeared 'normal' and some of which in retrospect were most definitely ASD, But of course I just reported what I saw, I wasn't looking for anything in particular, nor did I really know anything about ASD or the presentations. Quite naïve really.

    To be truthful, even when they were diagnosed I probably remained somewhat in denial, which is a shame really as I could have learnt a lot of coping strategies sooner if I'd done more research and read up on certain behaviours.

    But in answer to your question, Yes I worried all the time about what i was witnessing. I may be pre-empting things here as you don't have a diagnosis yet and your son is still quite young, but when I questioned my Ed Psych about some of the more 'Normal' behaviours I was witnessing, he told me that in his opinion they appeared not to be 'natural, behaviours' but more 'learnt.'

    This began to make more sense to me then and gave me the confidence to persue an assessment. The difficulty with presentation of anybody on the spectrum is that each presents differently. Some can even mask their condition very well, especially older people on the spectrum. It’s a coping strategy used to help you fit in.

    l have had well-meaning individuals telling me that there was nothing wrong with my sons when they were young, in an effort to make me feel better, but the truth is that comments like that don't help. They can even cause you to start second guessing yourself, which I strongly urge you not to do. If you suspect all is not right, you are doing the best thing for your child by getting them assessed. And if you do get a diagnosis, early intervention can make a huge impact in helping your son.

    I remember trying to talk to a primary Head teacher about my son once, who insisted my son was fine in School and all was well. I explained he seemed deeply in his own world and did not play with others and also that I had serious concerns over his reading and writing difficulties. He turned to me very arrogantly and said, 'Lets take a look shall we?' and we left his office to observe the children from the classroom window as they played in the playground outside.

    My son was sat on the playground floor all alone in the corner, rocking and talking to a piece of blue tack he kept in his pocket as a stress ball. I simply burst into tears. The Head remained in denial until I commissioned an ED Psych’s and Dyslexia report that finally realised my concerns and spelt it out in black & white. At that point I took them both out of the School and home educated them. This was the catalyst that prompted me to have my sons assessed.

    On the issue of sleep it's always been a battle with my sons. One comfort eats at night and now he's older that can be an issue if he tries cooking unsupervised. The other has night terrors and will walk over furniture in a sleep state, which can be quite dangerous. For obvious reasons, nights are very disturbed in our household.

    When my children were younger, I employed a whole host of strategies in succession and repeated them in rotation when they began to wane in their effectiveness.

    Here are just some i've used to help effect sleep with my boys. I’m sure you may have tried some yourself already.

     

    • Routine:- A regular routine is essential for bed time and ideally any wind down from daytime activities should be started much earlier than when its time to go to bed. Calm pursuits, not stimulating.
    • Eating:- eating something either toO early or too tale in the day can have an effect. Most people say you should not eat after a certain hour, however in the case of one of my boys I’ve had to move his last eating time forward to much later to help sustain him for a greater period of the night. (He has to eat regularly so that he doesn’t feel unwell, but for some reason his night time switch doesn’t recognise the fast period that most of us have at night.) Experiment with the timings of the last meal to see if this has an effect.
    • Ear ache, clingy behaviour or crying at bedtime and won't go down to sleep alone. :- Take off the tee-shirt you've worn all day (The smellier the better) and wrap it around a hot water bottle ensuring the water inside is not too hot. For ear ache, let the child lie, painful ear down, on the warm hot water bottle and tee-shirt. The warmth is soothing for the pain and also comforting like mums cuddles, but also the heat makes the scent on your tee-shirt (Your scent) more noticeable as your childs nose is quite close to it. It gives the comfort of your scent without you constant presence, which I know can be very draining
    • Sensory overload:- sometimes people find the silence of night time too overwhelming and will make noise themselves to drown out that overload or anxiety. This can result in screaming at bedtime.  Choose a calming CD, TAPE etc. (Sorry showing my age here) or MP3 and play it on a low volume. Experiment with different genres, bird noises, water sounds etc or even with childrens audio books . Put it on a loop, as when it stops they are sure to wake again.
    • Bathing:- A bath before bedtime seems to relax the most anxious of us and the same applies to those on the spectrum, providing they don't have sensory issues associated with it. (My son loved baths, but would scream the house down if he was showered him before bedtime.) Bath time every evening isn't always practical, but can have an impact if done at least every other day.
    • Light:- light stimulus has a huge impact on those with sensory issues. Make sure the room is comfortable, warm and dimly lit. The blue light emitted from led apparatus like TV's, computers, pads etc has now been scientifically proven to disturb the sleep patterns in the brain and so will standby lights on appliances, so make sure they are turned off or removed from the room. (It’s worth mentioning at this point that a friend of mine who also had a child on the spectrum actually used a coloured light mobile to sooth her child, as he was calmed by the pattern on the ceiling. Experiment with whatever you feel is best.
    • Smell:- In times of illness or just for sleep purposes, I’ve used scent to help calm. Lavender being my favourite, which I could use as a roll-on on the skin, in an aroma fan, as a linen spray or in hot water for Chest infections. Although, with Chest infections I tended to use a few drops of eucalyptus or Olbas oil in hot water. Lavender can also be used as a calming scent if combined with the bath water.
    • Touch:- My son hated hugs, but loved 'Strokey Strokes'. It sounds odd I know, but ‘Strokey Strokes’ really just involved me doing ‘Round & Round the Garden’ on the palm of his hand. He was captivated by the motion and soothed by the effect. See if you son is receptive to a similar calming stimulus.
    • Grounding:- I never realised what I was doing, but with one of my boys I noticed he favoured a particular, very heavy and cumbersome duvet on him at night. As the room was cool I would also add a blanket on top of this so he stayed warm. This seemed to calm him. Many years later I learned that some youngsters need the feeling of being grounded and clearly this grounded him. Nowadays, you can purchase weighted blankets for exactly that purpose. Find out if this helps first before you rush out and buy one, but bear in mind that overheating maybe an issue with too many blankets.
    • Clothing:- Your child may favour a certain pair of PJ's. If so, try and get a few pairs. Sensory irritation due to night clothes that cause distress is quite common, but the most often overlooked. Experiment with seamless items or things that are soft. My son was always naked by the morning until I realized his PJ's were actually uncomfortable for him.

    I hope some of these ideas work for you. It's very much trial and error, but do try things for a prolonged period to start, so that he has time to adjust.

    Good Luck! My heart goes out to you.

    Regards

    Coogybear xx

  • Hi Coogybear

    Thank you so much for your reply.  It was really interesting to read about your experience with your boys, and I am grateful for all of the information too.

    Funny you should mention food intollerance.  He has recently started a milk free diet and is under a Gastro Consultant and nutritionist for this too.  I noticed a huge change in his sleep at night since changing this, but we still have the battle to get him to sleep.

    I haven't looked into local support groups, but will definitely ring the above number, that's great thank you.

    Can I ask did you ever question whether or not your boys did show signs of ASD when you were initially going through the assessment and diagnoses, or were you always sure?  As like I mentioned some days he does certain behaviours and I am convinced there is something there with ASD, then other times he may communicate better, and I talk myself out of it again.

    Thank you so much again for your reponse. xxx

  • Hi williamsmum2210,

      First of all, welcome. I'm sure you will find many people on this forum who are able to offer advice and support.

    I have two boys on the spectrum, both of which present differently. One shouts and is behaviourally challenging, the other quite tearful and introvert. Neither of my boys sleep well (up most every night.) but both sleep deeply during the day and are a struggle to wake in the morning. Both, although high functioning, also have learning difficulties.

    Oddly enough, my son had a similar experience to you recently, whereby we were at the GP's and he spotted a young child sensory seeking and immediately recognised himself at that age. He's 16 now.

    What you describe sounds very familiar to me, but it seems like your health care professionals are a bit more on the ball than mine. I struggled for years with no support before they got assessed and diagnosed. Even after diagnosis, support was virtually none existent, however, after a long fight I managed to achieve good statements to cover their learning difficulties in education and great support from a very forward thinking mainstream school, which has made a huge impact on their lives.

    The most positive thing I can say, is that I love my boys with all my heart. Yes they have ASD, yes they are wired differently and yes every day presents new challenges, but the journey I’ve shared with them has been a truly humbling one. When I’m in the midst of a major meltdown with my son, I have to remind myself of the precious moments when recognition, a gesture, acceptance or a kind word of appreciation makes it from their lips to your ears or from their arms to a hug for you.

    For me, I viewed ASD as a different language I needed to learn in order to communicate with my sons. Gradually over the years, I’ve learned to read the signs to interoperate what is meant and the nuances that form part of each of my sons make up. The stimming (Hand flapping), the intense absorption etc.

    One of my sons didn't speak for some time, so communication was a real issue. From early on, I had British sign language posters on their bedroom wall to aid communication and i signed whenever i spoke with them. (Neither child is deaf incidentally, they have auditory processing difficulties.) but any way you find as a means to communicate is what matters. My eldest is now signs proficiently, but is also extremely articulate.

    The journey for assessment can be a long one and of course it's important to know. but i think the journey of learning to read your son, is equally as important. 

    You sound very observant and aware of your sons behaviour. I was equally aware, but didn't understand that this could be due to ASD at the time. It helped me to write everything down as you have done above. To list all the things I’d recognised and to give it to the consultant when i saw them. (I struggle when in stressful environments and would always forget to ask or say something, which i'd later remember as the consulting room door closed behind me.) If you write it down it's clear to all, what you experience, even if it doesn't present in consultants room at the time.

    Illness, muscular difficulties and sensitivity to certain foods has been a constant feature in my boys lives and has required some more lateral thinking in recent years. Many I’ve spoken to move toward more natural remedies and solutions to illnesses and infections and I have to say I lean very much that way too. Cravings for certain food etc. can be a sign of the body adapting to the different demands it faces. Equally, what we eat can affect our health greatly. My son sufferers serious debilitating migraines which can be brought on by both stress and trigger foods so if we eliminate the trigger foods then you can look to manage the stress factors. I have also heard some say that childhood ear infections seem to be closely linked to dairy intake, perhaps you could do a little research on this. 

    I would seriously consider a screening for any allergy or food intolerance issues your son has. Do get professional advice though. Eliminating foods completely without professional supervision can compromise a child’s health even further. However, this could dramatically reduce the infection occurrence and make life much more bearable for all concerned.

    My heart goes out to you and I hope it is helpful to know that there are others who are experiencing or who know first-hand what you are going through.

    Can I ask, are there any support groups for parents in the area you live? If you are not sure you can ring the NAS Helpline and they can check their listings for support networks locally to yourself. 

    (Autism helpline 0808 800 4104.  10am-4pm Mon-Fri Excluding bank holidays.)

    Take Care

    Coogybear xx

     

  • Hi Ayres

    Thank you very much for your reply, it's nice to hear that somebody else has had a diagnoses before 2nd birthday.

    We haven't been asked to take a list, but I have been keeping one anyway and intend to take it with me, as I can be very forgetful (especially when I'm stressed).

    I just feel very confused at the moment, as I said earlier, sometimes he displays loads of different behaviours that I would be concerned about being signs of autism.  Then other times I think he's just fine, so it will be nice to hear what the pediatrician has to say about it.

    I would really love to keep in touch with you, that would be great. Thank you. xx

  • Thank you very much for your response, it's really great to hear other peoples experience

  • Hello sweetheart thoughts are with you at this time. It is a difficult thing to wait to be seen but rest assured you are not alone. My son was diagnosed before his 2nd birthday on his first paediatric appointment so everyone will experience a different outcome. Since his diagnosis and referral to lots of different services his progress is amazing. Dont get me wrong we have to take pride in the small things he does rather than him being at the same level as his peers but every child is different and as you will hear numerous times on your journey your child is still very young. Have you been asked to list the traits of autism you think your son has for the paediatric appointment? We found this helpful to do so he was aware of multiple things before the assessment day incase you forget things or he does not display these at the appointment. In answer to your other question yes all autistic spectrum disordera are displayed differently in different children. We are in the proceans of attending an early bird course to learn all about it and the differences can be staggering. If you would like to get in touch with me let me know as it can be difficult to find parents dealing with this at Williams young age. Good luck xx

  • Usually professionals like to wait until the child is 3 years old before  making a formal diagnosis, and some like to wait longer, as dev may be slow for various  reasons.

    I have started reading a book called "out of sync child"'  it addresses some of the issues you are facing and gives some strategies to use.

    I have two teenage son's who both have asc.  They both struggled with sleeping, but now sleep very well.  Youngest hated milk and still does, the other loves milk.  One shouts when having a meltdown, the other cries instead.  Both have the same diagnosis, but are very different in their presentation.  Both have heightened senses, which maybe why your son cries in shops, lights too bright, different smells could be causing his reaction.

    From my experience you may find yourself constantly fighting for your child rights.  My one piece of advice I would give anyone seeking a diagnosis and further support is too find professionals who are qualified in understanding autism.  My gp knows less than me and I am now educationing their tutors.

    Hope it all works out for you all.