To push for help/diagnosis or not? Please tell me what you think...

[sarlbear]

My ds (middle child of 3) is 3 and I've felt he is 'different' since he was about 2 weeks old. As a newborn and an older baby, he had terrible eczema, so I put his quirks down to the obvious discomfort he must have been experiencing. However, as a baby, he was NEVER still, even when asleep, he slept for, at times, no more than 40mins in a go, and constantly cried.

As he grew older, he reached developmental milestones on or before schedule, but was incredibly clingy. I asked for help from the health visitor, but was told it was a good sign, as he was developing good attachments. He never responded to 'no' and seemed to just not care about any behavioural sanctions or rewards. I have lost count of the number of times I've been asked 'do you need any help there, love?' by a friendly and sympathetic shopper, as he lay screaming and thrashing on the floor of a supermarket or pavement!

Now he is three and he seems to have many classic signs of being on the autistic spectrum (and friends who have children with ASD have said that its like looking at their own situation a few years ago), but also some strong counter-indicators. He is incredibly anxious in certain situations. He repeats questions about our daily routine again and again; he seeks reassurance about my feelings towards him, e.g. 'mummy are you happy with me?' He is claustrophobic and hates certain sounds/noises. His senses seem hyper sensitive, or very dulled, according to his current state of mind (he hears noises that he can't bear, that I can only just pick up, he finds some 'smells' unbearable, he likes to be hugged at night time by me lying next to him, but not touching him, he eats/gnaws on pretty much anything - shop tills, slugs, the carpet, washing tablets- he finds some clothes very uncomfortable but really prefers others, etc, etc). He has certain routines that we have to follow, eg we must park in the same space every time I drop my dd off or pick her up from school, and becomes very distressed and anxious when we deviate from these routines. He becomes obsessed with Disney films. He has monumental tantrums, often lasting in excess of an hour, where he appears to become savage, like a wild animal; alternatively he withdraws from a situation he is angry at, and just sits down on the floor, refusing to move, or talk to anyone. He often gets 'bouncy' and pings around the house like a bouncy ball. He is still very clingy towards me and can scream and bang on the front door for over an hour, if I leave when he is feeling vulnerable. There are occasions when he doesn't seem to be able to retain instructions from one day-to-the-next, or from one-minute-to-the next.

On the other hand, he is very charming, has great spoken language (although this can be atypical, eg he will say 'I shall consider it' instead of 'I'll think about it') and plays with some degree of imagination with his older sister. He often seems eccentric or quirky (or demanding and high maintenance, but nothing more serious) in public, but manages to hold it together quite well in most situations.

I am an experienced teacher, with some (limited) experience of supporting children with SEN and I've drawn upon all my knowledge to put in lots of strategies to support him (visual timetable, given routines and ways of responding to different behaviours/situations, meeting routines, teaching him how to respond to things other children would pick up naturally etc, etc), which I think have enabled him to cope well in most situations.

He has been seen by the local SEN service provider for under threes, and the child development advisor who worked with him was fantastic. She felt he could have aspergers, and asked for a multi-disciplinary assessment and for him to be seen by a clinical pyschologist. She also gave lots of practical tips for supporting him day-to-day, some of which have worked really well, whilst others haven't worked so well.

Unfortunately for him, his pre-school setting reported that they have no concerns (despite having to peel him off me very morning for over a year, and telling me he doesn't have any friends, he just plays on his own when I asked who to invite to his birthday party), and the day he was observed by the local pre-school senco he had a brilliant day and she reported no concerns, other than he walks on his toes. This now means he is unlikely to have any assessment, and as he is now 3, he has been discharged from the under three's sen service. The child development advisor has asked that he be seen by a community paed, to try to get him assessed via that route, but she thinks that with the pressures on the budget, this is unlikely.

I now don't know what to do!!

I think my parenting skills are pretty up to scratch (my other two children are very well-balanced, confident and respond well to behaviour management strategies and my friends often approach me for parenting advice. When I look back at difficult situations that have arisen and evaluate what I could have done to prevent them, I often think I've responded/tried to pre-empt in a pretty reasonable, proactive way) so I really don't think its a case of poor parenting.

I don't think I'm just being a neurotic mum! When he's coping well there are times when I think maybe I'm just seeing things I know to look out for, but when he's not coping well, it seems absolutely obvious that there's a problem.

I really don't want to make a fuss if there is no issue, but at the same time, I don't feel I'm doing my job as his mum properly by letting this slide. I feel that with a diagnosis of some sort, there may be further ways of supporting him that are available, but more importantly, he will be better understood by his teachers as he moves to nursery and then into school. However, its difficult to gather much evidence to support any assessment when he copes so well at preschool. And I realise he's hardly going to be top of any list of priorities in such austere times when there are many, many children with much more severe needs.

I don't know what I will do when he gets to big for me to pick up off the floor and carry back to the car when he refuses to budge on an outing (something I do about once a week at the moment).

Sorry to ramble on, but once I start its difficult to stop - kind of like opening the floodgates, I suppose, a bit of a relief to 'talk' to someone.

Please let me know what you think. Surely there must be lots of you who have had similar dillemas or who have similar children who can give me some pointers or share your valuable experience?

My DS's issues were primarily language based, so different to yours. But yes, definitely push for help or diagnosis. And don't feel pushed into not making a fuss as his needs are apparently not that severe. If you hang back, it won't make other parents have a fairer allocation of resources, don't feel guilted into not looking for appropriate help for your child. I appreciate that it's harder to get taken seriously when the issues are behavioural and not accompanied by an evident language delay.

Thanks Light Passenger.

What you say makes sense.

I think reading what I wrote, seeing it all in black and white, kind of makes the answer obvious! He (and I to help him) needs help.

Its good to get other people's perspectives though, especially if they have had similar or related experiences.

Your list of concerns are pretty extensive, I'd say. Even the positives include rather formal speech, which can be seen in DC with AS. It is harder when there's no speech delay, but you don't get speech delay with AS.

Can't you ask via your GP to be referred to a developmental paed, it doesn't have to go through the education system? My DS was referred by the HV, though he has ASD rather than AS.

Personally, I think DC who are borderline sometimes often get a raw deal. They still need early intervention, and in fact they have a lot of potential to become fully functioning, independent adults. Correct intervention now may save lots of heartache and money in the future.

I find have similar problem with my preschool. Ds has hypermobility and significant delays of motor function. We also suspect aspergers. Because my ds is able to keep up with peers at present no one is concerned (despite me copying them in to correspondence from comm paed). They do admit that something is wrong but not overly concerned. Their advice to me is to keep seeing gp. I am seeing hv next week and will be trying to get a camhs referral from them.

Panicking as starting school in September and think all going to go wrong from there. I am making some headway with the NHS for his hypermobility etc but the process is very slow. I personally am considering going private re the aspergers dx as want everything in place before ds starts school. Have looked into it a lot and from what I can gather could be waiting literally years for a dx on NHS whilst they wait and see. I want to know what I can force / nag the school to put in place for him so that school can be a fun learning environment not a nightmare for ds.

I know private diagnosis does cost a lot and that the lea will try to ignore dx, however would give us a better starting point to argue / fight from and hopefully save ds a few years of heartache. Don't know if thats any help at all.

our ds is 5 and was diagnosed with Aspergers last year and really I could have written your post 2 years ago in terms of how you describe your son.
Ds's nursery did not think that there were any major issues and were really surprised when we described him at home!
So we initially went for assessment via the GP (didn't know what else to do) who referred us to a community Paed who then got him assessed by a full team of SALTs/OTs/Social Worker and finally a consultant Paed and senior SALT specialising in Autistic spectrum disorders.. we were really surprised and pleased with the speed of the process, it only took 9 months from the first GP appointment. We were also pleased at how seriously everyone took us - we did wonder if we were being totally neurotic, especially as ds is our oldest! We are aware now that we are lucky to live in a city (Edinburgh) where there is a bunch of very committed ASD specialists who seem ready to diagnose early in order to get intervention in as soon as possible.
It does mean for our ds who is in p1 (same as reception class) that he is getting good support and is mostly enjoying school, the school are even planning now for next year for him.
So anyway, I just wanted to say that I think the community Paed might be the way ahead for you! you can probably see my past threads on this topic which show the process we went through and our thinking.
All the best..

I agree press ahead, you have major concerns and you are clearly putting in a monumental effort to get him to cope / pass in most situations when if he were typical he would be doing it without you even thinking about it. Its often the case that all the adjustments you make become your normal so that you forget that actually other parents don't have to do any of this work.

I know lots of NHS / PCT etc are saying they can't afford to do assessments anymore but this is not true. Its about priorities have they stopped assessing adults for cancer or children for leukaemia, of course not, so why should autism be treated differently. Lots of NHS treatment is handed out without people having to prove they are worthy or its cost effective.

Look at the recent NICE guidance on autism diagnosis (take it with you to the GP if necessary) and if you get knocked back immediately complain to the Trust and write to your MP. It is (at least until the NHS bill gets through) a universal health service free at the point of delivery. Don't take no for an answer. Agree go via your GP, don't mention the pre school just mention your own concerns and expertise

Thank you so much everyone.

Whilst obviously, I'd wish no-one had had similar experiences, for eveyone's sanity, its such a relief to know that other people have had similar issues, and pushing for support and a diagnosis seems to be the right thing to do.

I just want him to feel secure and comfortable in everyday situations and for the rest of the family to experience some normality around him. I can see his potential, but I don't know if I have the skills to help him reach it as things stand at the moment.

I shall summon some strength and get pursuing a referral!

I agree press ahead, I could have wrote the first couple of paragraphs to a tee four years ago. ds 7 has just been dx HFA.

There is not one thing in what you have wrote that makes me think no that doesn't sound like ASD.

You sound like your doing an amazing job, you have your own professional experiance to back up what your mummy instincts are telling you.