Published on 12, July, 2020
Hello, I'm the mum of a 12 year old boy, just been recommended a diagnosis of ASD by CAMHS in our initial appointment and currently waiting for our next appointment to come through. My son's school has been excellent in its SEN provision since he started there 15 months ago. He has good support, but is struggling in a secondary school setting. We have known from nursery that our son exhibited ADS traits, as it was flagged to us several times, but his father (who himself exhibits these traits and will now admit this) was reluctant to get our son seen and, since he works in a school, I trusted his judgement on this and accepted it, as he didn't want our son labelled. It's become apparent over time that in order to help our son, we had to follow the school's recommendation and get him properly assessed. He did so well coping at primary school, it was a small, gentle village school. He is now at a mixed secondary school and really struggles with social behaviour, has some OCD which distresses him, has had a couple of serious incidents where he's become obsessed with another child and followed them around and behaved inappropriately towards them. He is a good, kind, sweet, intelligent boy and I will be relieved, for him, and for our family, to receive the diagnosis. I'm posting here as am extremely new to all this, this is the first Forum I've posted on, and wondered what the best first steps are in terms of building a community of support for my son and for the family. Thanks for any help/replies.
Hello,I am a mum and single parent.My daughter has gone through the assessment process at CAHMS and very recently received a diagnosis of ASD .In my daughter's case it was not 'obvious' that the ASD assessment would be the most suitable course of action. My daughter coped well with primary school but things changed dramatically when she made the transition to secondary school.It took 2 referrals to CAHMS and two years to get to the point to establish my daughter was likely to be on the autistic spectrum, a further year to reach diagnosis.It has been a tough journey ,often very lonely/isolating at times-for me and my daughter. Nevertheless, the diagnosis has brought a sense of validation and relief.My daughter's dad has now expressed that he had been in 'denial' about the possibility that our daughter could be diagnosed with ASD,it has been obvious to me that he was in denial as he has consistently acted in a very unhelpful manner,too much to go into but his narrow viewpoint and interference has been very unhelpful.Beyond the context of meetings at CAHMS, other people have not listened to her, they have not listened to me,it is tough but not impossible to deal with. I have always been able to reach out and speak to CAHMS about any issues that have occurred during my daughter's assessment period and they have always been very supportive.
First steps-take a mental note to trust your judgement and to hold on to hope-the assessment process takes time-it could feel too long but keep in mind a diagnosis/result will occur.(In your son's case it is straight to assessment for ASD but it will still take time to reach the point of diagnosis.(Upon reflection,my daughter and I consider it a good thing that her assessment took a long time as it gave her the time that she needed to build up trust in CAHMS...I found it frustrating as the school and other people kept asking,'what is happening , what do we do...let's take a firm approach'!!!!! Arghh ,I had to stand firm against the 'all that is needed is good old fashioned discipline approach' as it was obvious to me that this would not help my daughter!!!).
Whilst my daughter was undergoing assessment at CAHMS,I contacted the school to request input from an Educational Psychologist-my ultimate aim is for my daughter to receive a CSP/Co-ordinated support plan.
Rely on your own instincts when it comes to the school, again ,trust your judgement .Do all that you can to build and maintain a good relationship with the school,remain open to the idea that a alternative provision could be beneficial. It will not be the case for all but my experience of dealing with school has not been satisfactory-my daughter's school has lacked leadership and have failed to respect my daughter's need to spend time within the 'support' base-a new headteacher has taken over-here hoping that this will mark a change for the better.(I am open to a variety of possibilities regarding education, my primary focus/priority is driven with regard to my daughter's well being.The education professionals are ultimately focused my daughter's potential to achieve good exam results,Health professionals are focused on my daughter's well being.Ed Psych are in agreement with the health professionals but their viewpoint has also been ignored to date.
Well being-I do things to enable my daughter to pursue interests she has out with school.I have been criticised for being 'too lenient'.for rewarding my daughter for 'bad' behaviour-My daughter is very well behaved,she experiences shutdown when she is overwhelmed,she has experienced intense self loathing,she has not done anything wrong .It makes no sense to me to effectively punish my daughter for being herself.It has and is incredibly important to ensure she has the opportunity to meet people who share her own interests,to engage in activities that offer her escape from environments that trigger sensory overload.
I am aware that I am very new to this group too,my response offers a platform for me to share a message I am sure so many people want and need to express-'My child is wonderful,please see the good and understand the 'odd' stuff is really not so 'odd' and not so difficult to understand'I feel like an expert when it comes to knowing my daughter ,I am aware that I am still learning about her,what it really feels to be her-I have been doing this throughout the assessment period-the diagnosis is important but was not important to me and my daughter during the assessment period-I hope this makes sense,all we were searching for was a way for my daughter to feel good about herself,to help her find stratigies to help her and for approaches that would help us understand each other-a firm foundation to extend out to the rest of the world.I can experience the environment very differently in comparison to my daughter,when I am cold she feels warm,certain noises I am not aware off until she mentions how load and annoying it is she picks up on conversations in a crowded room as if she has supersonic hearing-could be advantageous at times but this can also cause inner distress.I feel that I am able to detect the 'signs' ,my daughter feels that at last there is a person in her life that understands her and is willing to do more.I talk about 'difficulties but this does not equate to everything being 'bad'.
Hi,
As the Father of a severely autistic son now aged 36 When he was diagnosed at 3.5 years he had to go to a special school. These have today been incorporated into Mainstream schools. So I am not up to date with how they work. But if your son is being disadvantaged by not getting an examination in order to tick a box for funding.
It used to be that the local authority education department had to issue a statement of needs, it may be that if this was done years ago it may need to be revised and updated.
So I suggest start with your GP. to intercede to request the local authority update this certificate of needs if he has one, as you indicate he needs and should get some more help.
They will not like to have to pay for this increase in costs to their budget, and will try to fob you off. This was common certainly 20 years ago. Our local authority sat on decisions for 18 months until the decision was worthless, and you could not appeal to the local government Ombudsman until a decision had been made to appeal against.( as They informed me (A nondecision). However at least one Court Case later I can recall ( Too late for me ) Stated that the L.A had to make their decision possibly within a week or similar, so it could go to appeal, because of its importance.
Your son (Not You) may be able to obtain the service of a specialist solicitor to assist Him on legal aid.. (Obviously with your help on his behalf) Your Local Council social services department should know of similar solicitors who they are dealing in "Community Care, Mental Health and Special Education Needs Law".
You also have an M.P. who will pleased to help you ease a problem off his desk if you put it there.
You can also get advice from your Citizens Advice Bureau, who may have had a similar problem to solve.
I hope this helps.
Thanks for your reply. It's so helpful even just to know that there are other parents dealing with the same things. All my mum friends have children who seem to be flying at secondary school and sometimes I feel I have no desire to speak to them about the things we are finding hard. I will look for groups local to our area.
I hope that your daughter receives her diagnosis and the support she needs.
Welcome to the forum! You will find lots of information and people who have similar experience to you here,
It is great that your sons school is being supportive (alot aren't) as for the obsession over different children this can be quite common in asd children, my daughter does this she allows herself one friend and will not leave her alone and gets extremely upset if she is rejected by that child which is starting to become a problem. We are also currently pursuing diagnosis and have known since a very young age that our daughter was I all likelihood asd but my partner didn't want her diagnosed at a young age as he didn't want that to be the first thing school saw when she started, unfortunately she became so adept at masking getting help now is difficult!
Look for local support groups in your area these can be really helpful in that you meet others in similar situations and can also find alot of practical advice on ways to help your son at home.
Wishing you all the best