Diagnosis = help v not labelling HFA

[Confusingsituation]

I'm having a bit of worry about this
DS has been diagnosed as having HFA but he is young and having been able to track down some experts, I have been told the outlook is good.
They sat on the fence for ages but I think they have finally come off the fence because it means help can be put in place.
The flip side is that he has now been labelled. I didn't mind this but some kindly ? relatives have put this worry into my head.
Anyone further down the road than me, can I ask you was it the right thing to do, to have the issue named? Can it ever be harmful??

[marchduck]

When my child was at nursery and going through assessment, the teachers and various specialists started using code words like Visual Learner and Special Interests. So they labelled him before he was labelled. The nursery also made it quite clear that DS was the one with the problem, not their rubbishy establishment. Requests like, could you get down on the floor and play with him sometimes?, or could you slow down your speech and make requests clearer?, were met with 'we don't have the resources' type response. The other parents in the nursery gave us the cold shoulder. In my experience, being different or delayed is treated as defective and pathological.

My experience is so different, and I certainly wasn't seeking out, or pushing for a diagnosis. DD's main difficulties are social communication and interaction. Her paed had suggested referral to autism assessment clinic and ed psych before she started pre-school. Her pre-school has been fantastic- she has taken part in everything, she goes on the trips, she has been invited to parties, she has a best friend. The staff have gone out of their way to support and include her. I have not picked up on any negative vibes from the other parents at all.

I don't regret "agreeing" to the diagnosis at all. It has helped, not hindered.

[aliblake]

your son is still the same little man he was before, just now he has a diagnosis for the way he is, I think the word label can be taken two ways, you can let it bother you or ride with it and embrace it, it is something he has been diagnosed with and although he and you will learning coping strategies, he will grow and flourish.

[coff33pot]

See this is how we as parents all look at things in such a varied way :)

When my child was at nursery and going through assessment, the teachers and various specialists started using code words like Visual Learner and Special Interests. So they labelled him before he was labelled. The nursery also made it quite clear that DS was the one with the problem, not their rubbishy establishment. Requests like, could you get down on the floor and play with him sometimes?, or could you slow down your speech and make requests clearer?, were met with 'we don't have the resources' type response. The other parents in the nursery gave us the cold shoulder. In my experience, being different or delayed is treated as defective and pathological.

Myself I would have been thrilled if teachers and specialists started noticing that my son was a visual learner etc as it would show they took time to notice. However I would have (and did) go potty if the school refused to put strategies in place to include my son. So yes the fact that they stated they dont have the resources was honest but a good nursery would have gone on to chase those resources or advised you where to go to ask for them :)

DS first school was hell and he was made to stand out due to anxiety a whole lot more. Fast forward to a school that wants to support and my son is still the same boy but because the support is there the other children are inclusive as the anxiety is hardly noticeable and if he is anxious he has the confidence now to say so, be understood and discreetly "have a job to do" to remove him from the anxious situation.

Its the team bit again isnt it.

Some of the human race do give us the cold shoulder but that is either due to ignorance or because they do not know what to say. Eventually I found with a dx the curious ones came forward and were more accepting and the ignorant ones stayed that way

I look at it that it is not up to the opinions of everyone else, they quite frankly do not count. What does count is the family circle, the child and his/her future and being strong enough to have broad shoulders either with or without a dx.

Some children cant cope in a school environment at all and those benefit more from HE. My son certainly relaxed and learnt more at home for a short period of HE than he did at the rubbish school.

[Kleinzeit]

What really seems to matter is tackling motor planning and non verbal communication skills. IME you'll get little help with either, as the whole autism industry is centred around the speech/language lobby.

Just wanted to point out that non-verbal communication is very much part of ?speech and language?. I didn?t realise this myself at first. The speech and language therapist who assessed my DS knew a lot about voice tone, facial expression, eye contact, body language and physical distance etc. ? and the therapists who ran the social communications skills group that he attended worked on those issues along with many others.

As for motor planning, that?s more of an occupational therapists? issue. And an OT did join the social-skills group at times.

So it?s not all bad news!

[StarlightMcKenzie]

I found no evidence for the whole 'visual learner' thing.

Two things I noted though. Visuals can support and aid understanding, plus provide a menu of choices when options are too wide ranging and abstract. They can be extremely useful for managing anxiety and inclusion in this way. Does this mean the child is a visual learner though - no, they would be good for most people i.e. calendars, diaries, McDonalds menus and yo sushi.

The other thing I noted was that reliance on visuals meant that my ds never got the auditory practice he needed, which ran the risk of making him BECOME reliant on visuals. He needed clues that visuals could provide yes, but he also needed practice listening, remembering and then acting upon auditory information.

[StarlightMcKenzie]

Yes. Absolutely. I spent a year fighting against visual timetables until I realised that their implementation was actually a way or prompting the TA to tell him what was coming next and to use less words. It was really for HER.

I allowed them at that point.

[coff33pot]

timetables certainly do help the teachers/tas slow down a tad

It has helped DS in the sense that he does "see" a picture of what to do next. Because of the ADHD and the sensory issues to sound, auditory etc it helps him to picture what is expected but also it is usually at the same time the things are taking place in class. This has moved on to clock times now as he has a "picture" in his head iyswim now he pictures it when the TA mentions whats next or asks in advance as he has this timetable visualised in his head? Now he is working to the clock ten minutes till we do this or 12 oclock is dinner etc to help him pace out himself and last longer on task. Discussion still takes place though.

Visual and language certainly need to be worked together.

[flowwithit]

Anxiousmotherdotnet
what qualifies you to make such a bold statement or is it just your opinion?

[flowwithit]

I think that making such bold statements upsets others because it shows lack of understanding for other peoples circumstances and isn't helpful to anyone. What is right for you or your family or child is not necessarily the same for another and there are so many other factors. In my opinion there isn't a right way or a wrong way there are many variants and parents make decisions for their children with the information they are given and their personal circumstances at the time.

[BeeMom]

zzzzz First of all, I am certain you are an exceptional woman, but the commute is just too far across the ocean, so I will have to decline the hook up offer

Secondly, I think I didn't speak clearly enough. I wasn't intending to say that HE is giving up, or that our children need to be fixed (clearly, I chose my words poorly). What I was trying to say is that, in order to access special services within the school, sometimes you must accept associated identifiers and descriptions (labels, if you must). Our children certainly do require educating in a very unique manner, and in some cases, there are just no school that can provide appropraite support for a child's unique needs.

What I had intended to say, but in re-reading it can see was unclear, was the alternative to addressing evident problems in social, communication and developmental areas is to withdraw, isolate and deny the existence of anything amiss. Because, simply put, if these challenges are not addressed, whether in an institutional (school) or home setting, they do become compounded over time. Like I said before, our children do need to be taught, they don't learn (particularly the nuances of social and nonverbal communication) through observation and immersion.

I apologise for the misunderstanding I caused.

[MareeeyaDoloures]

zzzz, every time I read your posts I'm in awe f how much good you've done for your ds by dropping the 30-kids-in-a-room rubbish. Your decision leads me to happy daydreams of giving up all this c**p and homeschooling the 3 dc. It's my plan B, and DH himself has actually suggested it (twice). As has my uncle, and an ex-teacher friend.

Tbh, I may be almost disappointed if we win at tribunal and I don't have to .

[MareeeyaDoloures]

You're hardly hiding him. Aren't you out and about every day with buses, shops, library etc for educational purposes?

[StarlightMcKenzie]

Well I've MET him (utterly utterly gorgeous), and I hardly ever go out these days so he's definitely not hidden.

[BeeMom]

I am not proud to admit this, but while I think an even more individualised education than Bee is getting in her current school would benefit her, I don't think I am emotionally equipped to provide it for her. I could not honestly do it.

In addition, the way the system works here, the ONLY access to PT/OT and SaLT we have here that does not require payment OOP is consultative through the schools. If I withdrew her, she would receive no therapy at all, as we cannot afford it.

We receive no respite at all, and her night nursing is sporadic at best, so the only "non-Bee" time i get to do my own work (I have a small business) is while she is at school. I provide her night cares as well as her daytime needs, and some days, as soon as her school bus pulls away, I collapse. Without the "break" that school provides, I would be in a difficult state. I am already dreading the 2 months' summer break that starts in a few weeks...

And I am ashamed to admit it...

[coff33pot]

zzzzz you have to hide him from me because I wanted to steal him the first time I saw him

Some people really do talk out of what they really should only be sitting on! (directed at zzzzzs judgmental lot not SNMN lol!)

The main thing is its working for your DS and everyone else within the family. It was a good move you made and you are doing a marvelous job at it. Tell them to bog off :)

[MareeeyaDoloures]

School as babysitter, respite, educational provision and therapy lead is nothing to be ashamed of. It's (almost) everyone's plan A.

[ouryve]

OK, I've had 24 hours out of this thread, but I shall try to catch up, since I've been addressed personally:

"Ouvyre, my personal experience of autistic behaviours is at the borderline/mainstream end."

Which is why you can not blindly accuse parents of bullying their children for seeking a diagnosis that will, ultimately, bring some sort of help. DS1 spent his first 3 years of life communicating to me that he was not happy in his own skin in every way he was capable of. When a 3 year old is screaming that all is not right with the world, you are not bullying him by finding out why. Nor was I bullying a child like DS2 stuck in a shell that didn't even allow him to walk or play for so long.

Can you see what was so hurtful, Anxiousmother?

I'm not even a sensitive soul, myself - I'm pretty thick skinned and laid back, so the fact that your throwaway comment (which I know wasn't said on the spur of the moment, because it's part of something you campaign constantly against) had me stomping around the house in one of those "someone is wrong on the internet" moods because i was really quite pissed off with it says a lot.

One of my complaints against the Autism label is the assumption that it is a neurological condition. Given the prevalence of motor planning and sensory processing difficulties I believe that autistic behaviours also have physiological roots.

Mother - eggs - suck. Motor planning relies on the responsiveness of the nervous system and on interactions between conscious and different unconscious parts of the brain. (An example is learning to knit - you have to learn the stitches using your conscious brain and its actions on your unconscious brain before it can become all unconscious and committed to muscle memory) Neurology is one of many disciplines which fall under that massive umbrella of physiology.

And I certainly wouldn't want to burden my child with a Pathology

Pathology is not just the study of how people become ill and/or die. Something pathological is rooted in physiological processes which are beyond conscious control. Here, you are expressing your prejudices and fear of words.

In fact, what many of us are upset by is your willingness to project your own feelings and insecurities on us. Maybe autism isn't a good fit for your child. Fair enough. Don't attack us because we're willing to accept that diagnosis.

I am more aware than most, having 2 boys with ASD who are like chalk and cheese, plus various members of my extended and ancestral family who fit the profile (diagnosed or otherwise), that autism is not a "label" which describes a very narrow stereotype.

Has the adage been repeated in this thread, yet? If you've met one child with autism, you've met one child with autism.

It's ouryve, btw