Diagnosis for a Child

Reading this is so depressing. What on Earth is going on when even the process of getting a referral for an assessment is so difficult?! It’s crazy. 
In my own son’s case (and this is several years ago now) his autism wasn’t flagged up by the school probably because he had Selective Mutism and they focussed on that and never mentioned autism until I eventually ‘woke up’ to it myself and raised the possibility with them. We ended up with Camhs who dawdled and dithered and then I phoned the NAS helpline (which annoyingly doesn’t exist anymore!) and they suggested going back to my GP and asking for a referral to the Community something or other (community paediatric ?! I can’t remember!) and they diagnosed my son after only 2 appointments. Looking back he was OBVIOUSLY autistic and it’s crazy he didn’t get diagnosed until he was 10. 
Anyway - we got there in the end - but it should have been quicker and easier. By the sound of what’s written above it’s even harder now. 
The truth is that services in the U.K. are increasingly useless. Underfunding over a period of years is the main reason. 
That’s what you get with Tory Governments - they always have a negative impact on public services - and especially services for vulnerable people. I wish people in the U.K. would wake up and stop voting for them. 

 Thank you. I have been communicating via emails with the school and given a written letter to the GP.

I have now sent a letter to the school to be used for an application for an autistic assessment to the School's Board.

Thanks for everyone's advice and support. 

Hi,

Sorry if this is an obvious question, but have you tried putting all of this in writing to the GP, school, or any other relevant place/person?

I’ve found that letters are usually always way more effective than verbal communication and as you are able to layout all of your sons issues so clearly in writing, I cannot imagine them just ignoring it and doing absolutely nothing in response. If they do, you may need to start writing some strong complaint letters.

I'm sorry to hear that your son's school are not supporting you with a referral.  It sounds very similar to our situation, because my children are managing at school they didn't feel it necessary to take it further.  It does seem that in this case the only way to get an assessment is to go private, which isn't possible for everyone.  

I guess you have to decide how important it is for you to have a diagnosis and how you think this will help going forward?  For me, because it was impacting our family life so much as we were arguing and unhappy much of the time, I want to know how I can support the boys better.  Now I know I can do this without a diagnosis, but it's very easy to lose sight of things or go back to old ways if you do not have an official diagnosis.  Even then, I'm sure it will have it's challenges.  

Going forward I want my children to be able to understand themselves and when they do come across challenges in life be better equipped to deal with it.  My son had his 11+ test this month and my younger son has his next September.  It caused a huge strain, and in these situations maybe I would deal with things differently if I had more information or a diagnosis.  I think my older son shows more ASD traits and my younger son more ADHD traits.  They clash A LOT!  

Since exploring our sons behaviours and assessments my husband is also likely ADHD/ASD, I think if he had know earlier on in life, lots of the things he struggled with and then that as a couple we found difficult would have made more sense.  

I do know that for much of this, I've felt quite isolated and alone.  I hope you have someone you can reach out to for support. 

My younger son today refused to go to school as he has a bad back.  I think he was fine to go in to school today, but something is bothering him and he couldn't muster the strength to go in.  As much as it's frustrating, I didn't force him, however I will speak to his teacher about my concerns.  

As a starting point could you do an online assessment / symptom checker?  

I have now asked the school to make an application for autistic assessment for my 9 year old son. I'm divorced from his father. 

The rep of the school has communicated to me that there are not enough reasons to refer my son for the autistic assessment because he performs fine in school. The rep told me that if we would ask for an assessment for every child that has some traits the system would not be able to support it. Then I told her that my son has a comprehensive list of traits she said that the father doesn't agree with me. I'm divorced from the father. She said that they need to consult both parents and that my son can follow the school curriculum so there are no concerns from their side. She said that the teach spoke to me in error.  Please if you can give me some advice, I would appreciate this. Not only is my son on the spectrum but I won't be able to get even an assessment due to the difference of opinion to the father. Below is the list of traits he demonstrates. 

1. 1. 1. A is very sensitive to loud sounds. Due to this, A doesn't want his hair to be dried with a hairdryer as the noise is too high for him; I vacuum clean at the time that he is not around; and if I am using an electronic mixer, I have to close the kitchen doors so that the noise doesn't reach A He tends to cover his ears when a sportscar or a motorbike pass by not to mention an ambulance or a police car with a syren on.

      2. A is a very picky eater. He loves chicken nuggets and would eat them all the time if he could. He dislikes any liquid foods such as soups and sauces. He only eats very selective food like pasta, noodles, chicken, plain burgers and pepperoni pizza. He will not have any sauces or pickles on his burger. He also his food assembled nicely and well presented on the plate. A dislikes vegetable in general. The only exception is broccoli and from time to time he will eat a carrot. He dislikes any salads, lettuce, tomato, peas, beans etc.

      3. A is quite sensitive to touch and won't like a proper hug but more of a tap on his shoulder.

      4. A has a tendency to produce some veery specific sounds. He has been producing one sound over couple of years, but then changed to a different sound. He also likes mimicking pets.

      5. A tends to be very quiet and play on his own. His younger brother tends to seek to play with A while A's preference is to play on his own. A often tells me that his younger brother is annoying him as he interrupts him in his play. Often A closes the door to his room so that he can play on his own and to prevent any interruptions by his younger brother.

      6. A gets stressed when his younger brother approaches him.

      7. He has very little interest in going outdoors and engaging in any outdoors activities. He has no interest in any of the sports and PE activities. A has been enrolled in a number of clubs including: football, swimming classes, archery etc. Despite the encouragement, he has not been engaged and has dropped out from football and swimming classes. He has been offered to participate in a number of other activities such as tennis and boxing but not been willing to participate in these. His preference is always to stay at home and play at home to going outdoors.

      8. A is obsessed with cars. He is very technical and can explain in detail the mechanics of each part of the car. He predominantly spends his free time in building cars with lego blocks. He loves science and electricity is his favourite and he is interested in a lot of detail and will be able to understand very advanced scientific theories.

      9. He only engages in conversation about very few topics, predominantly this is about cars and a game called Minecraft.

      10. A started speaking at slightly later stage, at around a year and a half and it took him a bit longer to develop his vocabulary.

      11. A has very few friends. While his younger brother tends to invite friends over and asks me to take him to the homes of his friends, A has never asked me to see any of his friends.

      12. A showed limited empathy towards his younger brother. When his younger brother started walking, he had a tendency to push him. There have been many instances where A has pushed, hit, kicked his brother.

      13. A doesn't respond when being called by his name or asked a question. It can take a very long time to gain his attention. Often, I have to come in front of him so he can see me before he will hear the question and provide a response.

      14. A dislikes school. He tells me that school is boring. He dislikes English, P/E and other subjects. He is only interested in maths and science. He tells me that he knows the answers to the experiments in advance of the experiment being conducted.

Thanks for sharing your own experience and for all the guidance in your note. 

Sounds different from here where schools tend not to suggest a diagnosis because they are not experts so it has to come from the parent. It seems they don't like to put it in writing.

I feel your frustration.

Hi, 

I also live in the same area as you.  Last year when my son was 8, I spoke to the GP about autistic traits that my son was demonstrating.  I think I had become more aware of it because of lockdown & home schooling.  I had written the information down that concerned me on a template that I found online.  As far as I can remember the GP made the referral to CAMHS, they wrote to me to say they will not be accepting the referral and to ask the school to make a referral to the community paediatric team.  When I discussed this with the school, they did not have any concerns with my son's behaviour and when the SEN teacher observed him in class, she also said there were no issues.  However I was having lots of issues at home, as well as with my older son, who I now suspect may be high functioning autistic.  The SEN teacher kind of fobbed me off and said to behave as though my son is autistic and it's not always helpful to have a label.  My boys are at a local private school, I'm not sure if this would have been handled better if they were at a comprehensive school.  

So a year on, I have taken things into my own hands and arranged a private assessment, because I feel an official diagnosis would actually be really helpful.  I know that even if they had accepted the referral, it could have taken a couple of years to be assessed.  My neighbour had an ADHD assessment for her daughter with the help of school quite quickly however is still waiting for and ASD assessment. 

Many of the private companies I contacted were not taking on new referrals however I did find one who are based in Sevenoaks / Sidcup area.  They are extremely helpful and the wait is a few months, also comes with a big price tag which I know is not always an option.  You might want to contact them for further information or look on the website - Connect Blue.  

It really isn't easy and I feel for you as I was really confused and didn't know who to turn to.  If you need any more information, I'm happy to help.

Hiya,

Contact your sons school and tell them the situation. if the teacher that suggested it to you is still working for his school then ask whether she could help with the referral, if not then speak to his current teacher about it and see what they say. if his old teacher had a concern about him having ASD then he should have had a conversation with other members of staff and possibly written it on file.

Teachers are usually quite willing to help when it comes to their students.

I understand why you want a diagnosis quickly, fingerscrossed it doesn't take too long

Alisha xx

Just called the GP again and they are stressing it has to come from the school - that this is the normal procedure. I asked for this in writing. 

My experience was that school did not see the autistic traits, so we went to GP ourselves. We did not get a referral until we had seen 3 different GPs. So might be worth making an appointment with another GP. When we got a diagnosis there was no doubt.