At the (possible) beginning of ASD journey

[lapanda]

Hi all,

I’m looking for some knowledge about going down the ASD diagnosis path. I’m not originally from the UK, and therefore not extremely familiar with how the NHS works for this sort of thing. It’s regarding my son, who is 19 months old. He has been displaying behaviours common with ASD for some time now, and as he’s coming up to the two year mark, and I imagine there will be delays in this process due to the pandemic, I thought now would be a good time to start gathering information from parents who have been through this process.

I’ve done a little bit of research, and I’m seeing that apparently things can go differently depending on where you live, so I get that. I won’t go into great detail about my son, since I’m not really looking for a diagnosis as such, but if anyone has any helpful tips on how I can be more helpful to a small child with ASD, that would be greatly appreciated. I don’t know what is the correct terminology, but I think (based on my research) that my son is probably very mildly autistic; he does not show any alarming behaviours at this time. But he certainly over the last 9-10 months has displayed more and more behaviours consistent with ASD.

I also just want to emphasise that I’m not worried that my son has ASD, he is a lovely boy, he is happy and healthy, and I know we’ll be fine. I just want to get a good start on being the best mum possible to him for whatever special needs he may have, and get familiar with anything related. And to be fair, he may not even be diagnosed with ASD anyway!

So, I have spoken earlier this summer with a health visitor over the phone regarding my son’s delayed speech, and ASD came up in that conversation, but she mentioned that he can’t be seen by a specialist regarding the speech stuff specifically until he’s at least two. It makes sense, I don’t really see my son being responsive to any kind of speech therapy for a long while yet. But should I see a GP regarding the ASD stuff yet? Or the health visitor? Does my son then get referred to be seen by a paediatrician? Will that not be until after he’s two?

These are the kinds of things I’d like to know. Just if I should get started on the process, and what that process involves. If anyone can let me know what they have done, or would recommend doing based on their experience, I’d very much appreciate it!

Thanks!

Sorry have realised I’ve posted in wrong place, I’ve requested to have it deleted!

Hi lapanda,

19 month is too early for ASD diagnoses, or to give opinion about speech. Only if the child is avoid eye contact completely, absence of response to names or extreme crying or anxiety, then other repetitive behaviour that anyone could notice in short span of time will be referred for assessment. Otherwise it happens after 24 or 30 months. In my case, my son was not talking at 2 yrs, and no one had concerns. Now at 3 yrs, he can talk in blocks of words or in short sentences, but he is in the ASD assessment pathway referred through his nursery few months before.
As far as I have heard, first talk to your HV and tell her your concern, if she is brushing it off, contact GP. If something is very noticeable, they would advise you as what needs to done further. Till then keep talking to him. Though your is not responding or looking at you, he/she is listening. Google to learn about improving eye contact.

HTH

Assessment through the NHS can be a long process, not because your son is too young but because the waiting lists to see the different specialists can be long (6-12M wait is not uncommon). The best advice would be to continue to educate yourself, there is a world of information out there but also many misconceptions and myths about autism - things like autistic toddlers having poor eye contact, lacking empathy and affection, not being social, etc - all myths. It is odd that ASD came up in a conversation about speech as autism is not a speech disorder, toddlers with autism can have poor speech, normal speech or advanced speech so the level of speech in a toddler does not tell you anything about autism, specially when speech delays are very common at this age. In addition there is no such thing as mild autism, autism is not mild in any form, it is a debilitating and complex condition - in addition, it is not possible to extrapolate current behaviours into future outcomes as behaviours and traits may appear (and disappear) with age, i.e a toddler showing deficits in social communication but otherwise having a full set of age appropriate skills may regress and loose all of those skills a year later. Learn about the assessment and diagnosis process so to understand better what to look out for. By 18M, if autism is present the signs will be there to see.

It's pretty much as everyone else has said in response to you. It is a really long and sometimes stressful process. My ds, now 4.5, showed signs of delays and certain behaviours. He didn't really start talking until he was 3.5. Even the waiting list for SALT was long. He was 3 before any SALT began.
You're right in that it can depend on where you are living, but generally speaking the waiting list for an ASD assessment is long, even up to 2 years. The G.P is a good place to start, to log your concerns.
The problem is, alot of children can have delays, similar to autistic traits, but actually catch up and be perfectly neurotypical.

Personally, despite waving my flag like a nutter for 18 mths, it was my ds nursery who were key to assessing him initially. They are unlikely to say from the outset that something is wrong, as they watch for behaviours, changes, emotions, social skills, development over a period of time. As the child grows older, often the autistic traits become more obvious. More is expected of kids as they grow older, and other children develop differently, which can highlight kids with ASD.
My ds nursery were superb. After about 6 months they suggested an ASD assessment. Our NHS list is 2 years. Pre 5, the list is shorter in some areas, than after 5.
I do know that sooner you obtain a diagnosis, all sorts of things can be put into place to help support your child should it be required.
Because my ds was finding nursery so overwhelming, i paid for a private ASD assessment. The National Autistic Helpline gave me some contacts. It is really expensive, and because of this, not in most of our budgets. However, my ds was really struggling, and I needed to get a better understanding of his needs to support him. The diagnosis really helped. We are still on a list for his NHS one though as I think this will be helpful as my son will be 2 years older.

Obviously, I don't know too much about your child, but go with your instincts. I found, everyone I approached, would ask if my son can do eye contact, (he does), does he line things up (he doesn't) does he have outbursts or flap (he doesn't). Its a really vast spectrum, and no 2 children are the same. You can self refer for an ASD assessment I think.
My son is very different at nursery, than he is at home. He appears far more ASD at nursery, than he does at home, it's more subtle.
From what I can gather, I get the impression that lots of people view really young children as too early to tell. This is because of such varied development at this age1-3. Most children are not seen until 5 or above for this very reason. Help is out there though, but you'll have to roll your sleeves up and keep asking. SALT, OT, GP HV are all great places to try. Together, you can build a picture.

It's pretty much as everyone else has said in response to you. It is a really long and sometimes stressful process. My ds, now 4.5, showed signs of delays and certain behaviours. He didn't really start talking until he was 3.5. Even the waiting list for SALT was long. He was 3 before any SALT began.
You're right in that it can depend on where you are living, but generally speaking the waiting list for an ASD assessment is long, even up to 2 years. The G.P is a good place to start, to log your concerns.
The problem is, alot of children can have delays, similar to autistic traits, but actually catch up and be perfectly neurotypical.

Personally, despite waving my flag like a nutter for 18 mths, it was my ds nursery who were key to assessing him initially. They are unlikely to say from the outset that something is wrong, as they watch for behaviours, changes, emotions, social skills, development over a period of time. As the child grows older, often the autistic traits become more obvious. More is expected of kids as they grow older, and other children develop differently, which can highlight kids with ASD.
My ds nursery were superb. After about 6 months they suggested an ASD assessment. Our NHS list is 2 years. Pre 5, the list is shorter in some areas, than after 5.
I do know that sooner you obtain a diagnosis, all sorts of things can be put into place to help support your child should it be required.
Because my ds was finding nursery so overwhelming, i paid for a private ASD assessment. The National Autistic Helpline gave me some contacts. It is really expensive, and because of this, not in most of our budgets. However, my ds was really struggling, and I needed to get a better understanding of his needs to support him. The diagnosis really helped. We are still on a list for his NHS one though as I think this will be helpful as my son will be 2 years older.

Obviously, I don't know too much about your child, but go with your instincts. I found, everyone I approached, would ask if my son can do eye contact, (he does), does he line things up (he doesn't) does he have outbursts or flap (he doesn't). Its a really vast spectrum, and no 2 children are the same. You can self refer for an ASD assessment I think.
My son is very different at nursery, than he is at home. He appears far more ASD at nursery, than he does at home, it's more subtle.
From what I can gather, I get the impression that lots of people view really young children as too early to tell. This is because of such varied development at this age1-3. Most children are not seen until 5 or above for this very reason. Help is out there though, but you'll have to roll your sleeves up and keep asking. SALT, OT, GP HV are all great places to try. Together, you can build a picture.

To add to the great advice you've had so far,

The MChat-R test can be done at 24 months. It's just a screening test, but can give the medics a clue that there may need to be further investigations.

Is he showing any signs of sensory behaviour? This is the most useful explanation of sensory processing that I've ever read, www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

As everyone has said, the diagnostic process can be very long and very slow, mostly because some behaviours are not markers for autism or other conditions until a child is over a certain age. It's very frustrating, but just go along with it and refuse to be fobbed off.

Read as much as you can about parenting an autistic child, you can use strategies that work for you as a family without any diagnosis.

Hello @lapanda, I can't offer any advice sadly but just to say my son is of a similar age to yours and we are also at the start of our ASD assessment journey after our nursery confirmed our suspicions that our son may be on the spectrum.
I will be following this thread and if you want to keep in touch to compare notes then I would be happy to hear from you.