Awaiting assessment for 2 year old son

Sure! The assessment lasted for about 1hour with 2 paediatricians, the senior consultant had a chat with me about my son and took notes whilst my son played and interacted with his assistant. She interacted with him getting him to play with some toys to see how he interacted with her and me and she later gave feedback. He concluded from the questions and her observations on the diagnosis.

They asked if I had any questions, which I didn't as I was a bit shocked on hearing the diagnosis and I wanted to read the report and then ask questions based on my concerns. I wish I had asked questions as I am still waiting on the report and any additional help or information. I didn't realise that the report may take up to 6 weeks or more. Bear that in mind, and ask what you can do in the meantime.

Based on the speech and language therapy we had started we got referred to a programme called more than words so having that support and meeting other parents has been a good start. One of the mum gave me some very useful resource for our borough which gives so much support. Not sure where you are based but we are in london in the Westminster area. So its also worth having a look at what services are offered through your council whilst you wait on a diagnosis.

I got a letter today though showing that we have been referred to Children and Young People occupational Therapy CYPOT and also the Clinical Nurse specialist at the medical centre and they would contact me when they receive the report.

So that's where we are at, at the moment. But it has been great meeting other mums who are able to give support and advise.

The assessment is social communication disorder assessment (SCD) pathway. You can read about the process online although they would send you the information before your little one's assessment. Or check www.clch.nhs.uk

To be honest, I already knew he was autistic so waiting for the diagnosis didn't really bother me that much. Obviously it was good to get it formally but we already had the Portage visits in place so that gave us something to focus on. I know it can be hard to wait not knowing for sure but it will come round quicker than you realise.

His assessment lasted about an hour and a half and started out with the paediatrician getting him to play with some toys to see how he interacted with her and me. Then she took a detailed history about his milestones, background, behaviours etc and gave us a diagnosis on the spot.

One thing I would suggest though is to keep challenging your son and taking him out of his comfort zone. Don't stop doing things just because he might get upset. The more he gets used to different things the more resilient he'll be. Hope you hear something soon x

Please, please give ABA a wide berth - it's been proven to have a long-term negative impact on autistic people's mental health. I know all parents are just trying to do what's best for their child, but a lot of autistic adults who went through ABA in childhood campaign against it very strongly.

Hi,

we are in Scotland our diagnosis took around 5 months.

We approached health visitor about our concerns who asked us to fill out a whole book of questions then she went to observe at his nursery centre. (Son was 2 1/2) She referred to doctor. Time between HV referral and doctor appointment 8 weeks. At doc appointment there was a play worker who tested my son while I spoke to doctor. Results received there and then he was advanced in all areas except social skills/language and communication. I was asked if I wanted a full diagnosis.

That consisted of a SALT coming to my house to take notes - watch us interact and I think to check his living surroundings- check that I have enough age appropriate toys etc.

then she went to his nursery to observe him interacting and she wrote a report. The same play worker who assessed him at the surgery went to his nursery to observe him and also wrote a report.

time was around 12 week - so 5 months in total

my son was diagnosed with autism (high functioning) and he has hyperlexia. (Reading and writing age 2). Even with a diagnosis we were given no help, services or assistance from nhs.

my recommendation is to contact ASN charities in your area they all offer support from communication classes to information sessions without a diagnosis. The parents of other children are a great support. Check your local universities for students studying ABA therapy or other strategies. They will be grateful of experience and will be low cost so win win. . Contact a SALT they are expensive but very worth it. The ones who do child led play are better. My son is now fully verbal with no jargon.she gave me amazing advice aswell and strategies to work on at home. After 16 private SALT sessions my son no longer harms any other children at nursery and can communicate needs no problem. He has gaps in his development as far as back and forth social communication goes but otherwise he’s doing well.

my advise for fast referral assessment is to keep on at your health visitor and doctor - keep calling them, if you have a rough day, call them, tell them things are difficult. note the dates and times you call and let them know you are keeping a diary -ask them to note it on their records too... I think that’s what got out diagnosis so quickly x

Hello, thanks for the reply ! 

I think it might be a year until my son possible gets a diagnosis as well, how did you cope during that time ? I keep feeling mixed emotions and feel like we just need an answer. 

can I ask how your assessment with your son was ? What they done on the day and how long after you found out the result, if it’s not too personal ! 

Thank you for your reply ! It’s so nice to know what your not alone when you go through this. Can I ask (if it’s not too personal) how the assessment went on the day ? Just what to expect and how they diagnose autism. 

You sound like your doing a great job already and thank you for the words of encouragement! 

Hello! 

I was in a similar situation to you. My son was diagnosed last October aged 2yrs & 2mths. He was referred just after his 1st birthday birthday so it took almost a year until he was seen. In the meantime our health visitor referred us to Portage who have been great. You don't need a formal diagnosis, just a delay of 6 months or more in at least 2 areas. My son has a home visit from a Portage work once a week and also goes to a Portage group. I would definitely speak to your health visitor to see if they can refer you

Hi,

I was in the same situation, and my son just diagnosed with autism a month ago. He's 2 years and 5 months and showed all the signs that you mentioned but he's doesn't use any words yet. I suggest going to play groups and dropping sessions that focus on developing speech because there is usually a language therapist on hand who can encourage some tips and by going there we were able to get referred to start speech and language therapy before we got the diagnosis. 

I know how frustrating it can be being on the waitlist for so long. But if you can get referred to the speech and language therapy, they run a lot of programmes and offer a lot of support which you can access.  

I have just pulled my child out of a mainstream nursery as he wasn't eating whilst at nursery and I don't think they could provide the attention that he required and I was referred to another nursery that can provide a one-2-one focus which is what I need.

And some words of encouragement, keep communicating with your son, get down to his level and use the pause technique to try to create engagement. It is a slow process but they are taking it all in and slowly they show little cues that they understand.

I hope this helps, as I am still discovering what comes next after diagnosis.