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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.

Parents

  • 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

     

Reply

  • 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

     

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