Not getting a decision

Hello. My son who is rising 4 years old has been undergoing assessments for ASD since December last year. Up until the age of around 2 and a half, he had no issues. He spoke well (very advanced vocabulary), he was happy, sociable, positive, calm and confident. As a baby he was so calm he hardly ever cried (hard to believe I know!).

At around 2 and a half, he suddenly developed major sensory issues. He suddenly could not tolerate many food tastes and textures, when he had been a great little eater up to this point. He became terrified of lots of noises and situations.

At the age of 3 he started into school. He has stuggled this year at school. He does not interact with other children at all, though he will chat away to adults. He seems to have lost the ability to play, and does not get involved with play activities anymore. His toiletting, which was perfect from 22 months, suddenly regressed, and now he has repeated accidents and anal retention. He has developed many obsessions and routines which he tantrums about if they are not stuck to. His reading and numeracy are well advanced for his age.

On school's advice, my health visitor referred us to Child Devlopment and CAMHS. He has been seen twice at Child Development by a Paediatrician, who says that he is not ASD. She hardly did any activities with him: just a jigsaw and asked him a few questions. She asked me lots of questions both times. She is insistent that he is not ASD. CAMHS have assessed him at their centre with us, and in school. They feel that he is ASD, but we are getting nowhere whilst these professionals argue it out between themselves, and my poor little boy is becoming more and more unhappy and distant.

Has anyone else had an experience like this? I am desperate to do anything to help him, but feel that no support is being offered by the NHS whilst they cannot agree. I am not desperate for him to have a "label". Far from it! I would just like to find a way to get my happy little boy back, and have him managing in life again.

What I have also found very upsetting, is that the paediatrician, last time we saw her, implied that the problem is all mine. She accused me of "making up" things about my son, and said that she thought I was a "very needy lady". She asked me outright if I have any mental health issues. I find that I am despairing with the NHS and their services.

  • Hi Stardust - I don't know where to start; there's so much going on.  Is the paediatrician a consultant or a Dr below that level?  If she isn't then you could ask to see her boss to try to thrash things out.  NHS Trusts have a Medical Director, so you could try writing/phoning to express your dissatisfaction with the present situation.  The paediatrician + camhs will be part of the same Trust, unless even more changes to the nhs have occurred + I didn't notice!  Keeping a daily diary about your child + videoing if necessary can add weight to your case.  The paediatrician should not have spoken to you as she did - you could state with honesty that your relationship with her has broken down.  

    I can't help with the toiletting issues which also most be v difficult.  I'm presuming he's the same at home as he is with school when it comes to using the toilet.  There are lots of posts on here which might be helpful.  Others will offer advice soon.

    I hope things work out when he moves to your school.  I hope the staff remain positive so that he can settle in + progress.  However, all the good will in the world cannot make up for the lack of a diagnosis + support in school from a teaching assistant who has been well trained in autism + is knowledgeable about your child.

    Apologies if I've mentioned loads of things you know and/or have already done.  I do feel for both of you.  I know you'll keep fighting.  Maybe worth checking out the home pg regarding your rights.  Good luck with everything.  Sorry I couldn't be of more help

  • Thanks for your suppotive reply. I think that technically CAMHS and Child development are different trusts. They are both the same area, but I think that the mental health trust is different from the trust which covers Child Dev. Even so, they ought to be able to work together better than this. CAHMS are trying to be supportive, but they are massively oversubscribed and have huge waiting lists. I've been told that the next part of the assessment may take months for an appointment, and there is nothing they can offer in the meantime.

    Yes, the toiletting has regressed at home too. I've posted another tread about it in the parenting section.

    His teacher for September is someone who has lots of experience with SEN children from her previous post, so I am hopeful that she will be able to forge a good relationship with him. There will be a classroom assistant in the class too, though I do not know who that will be yet, and what experience they will have of SEN.

    I will wait until my next appointment with CAMHS comes up, and then perhaps persue the Child Development side of things at a higher level. My son's teacher is writing a report to the paediatrician to support everything I discussed with her, to refute the idea that I am "making things up". The doctor in question is a consultant paediatrican with specialism in ASDs, so I presume that she really does know her stuff, but her offhand manner has been difficult to deal with.