Writing a speech on ASD - parents/carers what has been the most helpful thing professionals have done

[brightonite]

Hi there,

As the mum of a 7 year old with ASD who has 'been through the system', I have been asked to give a presentation to a group of education/health professionals on a parents experience of ASD. I am obviously going to speak from my own perspective but this request seems like a really good opportunity for me to let professionals know what families actually find helpful with regards to services Local Authorities/Individual professionals offer.

I have been thinking about the impact of ASD on my son and on our family and the challenges we have faced (eg. being taken seriously in the first place! as well as fighting for speech therapy) and some of the positive experiences we have encountered (eg. a brilliant paediatrician who actually did everything she said she would do.)

Can I ask other parents to what things you found helpful? What was your biggest challenge? Also would you be happy for me to incorporate this info into my speech? (Anonymously naturally)

Thank you
Brightonite x

It took 3.5 years to get a dx of ASD for Dd3, during that time the very best thing that a proff said to me was

"Treat her as though she does have ASD and use the strategies known to work with children with ASD" ie, visual timelines, Red and Yellow cards for behaviour modification.

She said that it would never do a child any harm to use the strategies and if it turned aout the Dd3 was autisitc she would be benefitting from the strategies earlier.

We followed the advice and it made such a massive difference to our lives, we have visuals everywhere at home.

A year later Dd3 was dx'ed with ASD and I am really glad we hadn't wasted that time.

The Proff was a Mental Health Nurse at CAMHS and I would hug her if I met her again.

Sorry meant to say, our biggest challenge was to make proffs take us seriously when we weren't being supported by school and Dd3 was doing fairly well academically.

And , yes feel free to incorperate this, if someone might listen then it is worth it.

The paed who saw ds at two and a half (after GP repeatedly refused to refer him) said "So your Gp thinks this is normal? I am worried just how bad it's got to be before they refer" Knowing that he believed me and knowing that he didn't believe the GP's assertion I had Munchausens did more for my confidence in my ability to parent ds than a year of counselling could have. Ds has severe autism diagnosed six months later.
The Child psych who taught me it was easier to teach ds an acceptable alternative behaviour than to try to stop an unacceptable one taught me an invaluable skill that I have used on numerous occasions in the last 14 years.
The speech therapist who taught me to teach ds to communicate rather than any real direct therapy because she felt that my constant input was a hundred times more worthwhile than her three weekly visit.
To be fair we've had a fair amount of positive experiences that on the whole really outweigh the bad.

Most helpful - staff who actually rolled up their sleeves, got down on the floor and interacted with my child and showed me how to interact. Nursery staff, TAs and Parents learn very little from advisory staff who come in, sit in a corner and criticise what you are doing but are not prepared to demonstrate how to do it themselves.

Least helpful - pretty much everything else.

I suppose top of my list would be wasting time on appointments with countless professionals in every sector who were allocated to help, support or advise me - only to find out that their actual remit was to find ways not to help, support or advise me so as to not spend any money. I would rather they had turned up and said 'we will only be able to visit your son once this term so lets get through as much as we can even though its vastly inadequate'.

when what they actually did was waste hours of my time defending why he didn't need help because he was too bright / not far enough behind on enough measures / didn't exactly meet the criteria / we ware asking too soon and hadn't exhausted all the options before them (even when it was obvious those options were totally inadequate) / they wouldn't do it because 'thats what DLA is for' / passing the buck to another dept.

If they don't want / can't provide something, just say so; but don't lie and spend hours of everyones time making up reasons why he doesn't need it.

if the time spent in meetings, appointments, responding to complaints and tribunal planning had been spent delivering actual intervention my son would have had about 200 hours of provision in the year before tribunal instead of the 1 hour he needed up with, and they would have had a better chance of winning.

And my other pet hate - speech therapists who say we don't do direct speech therapy because we think its better if the primary care giver works with the child - and then when your child gets to school suddenly the primary care giver is excluded from everything as 'they only work with the school not the parent'. Either I have a crucial role in my child learning to speak or I don't.

It's helpful when professionals state in advance what 'outcome' a particular meeting, phonecall, observation or intervention is planned. That way I can judge whether it is worth my or my ds' valuable time.

Endless unfocussed meetings logged as 'provision' is a waste of everyone's time.

Thank you guys - it is so interesting (and sad in some cases ) how your experiences replicate my own... I say that when my dh and I took time off work today to attend ds's annual statement review to find out that it had been cancelled by the new specialist teacher and no-one had communicated this to us. Gggrrrrr....

For balance though, we have had some fantastic individuals working with ds and they shine in a pretty poor cash-strapped bureaucratic system. I have struggled and I know the system, having worked in a related field. I have no idea how some parents and carers with no experience of the health or education system manage when facing it for the first time.

Anyway, thank you to you all - Starshit Terrorise, AgnesDiPesto, Insanityscratching and Ineedalife. You are stars and I hope to do us all justice! xxx

Never found a helpful professional

Best experience was going to the Open Day at independant FE College sepcailising in Aspergers and listening to the Head's welcome speech and thinking - Finally! Soemone who actually understand ASD.

Have found excellent people in the charitable sector who totally understand AS.

True partnership working is where professionals treat the parent as the key worker, and the professional advises in an expert capacity making it clear to the parent their limits of expertise.

Key worker and team leader....

Wet, the helpful ones I was referring to were all in the private sector . Probably driven there by having too many morals to engage will pisspoor services.

Actually I found the same when I was pregnant and because I wanted to have the kids at home i ended up with an independent midwife and again met a wonderful bunch of people who had abandoned the NHS as they were unable to provide the service they wanted and who ended up working for less money and job security and without insurance so they could the job properly

for us it was people who listened and were accountable, who did what they said they would, when they said they would, and who acknowledged our skills and knowledge while contributing theirs.

early intervention, took ds 2 years to get a dx, but before that he had a nursery that listened, learned and made great (SMART) IEPs and an amazing portage teacher, his progress during this time was crucial. Not much since the school system though.

For ds breaking things down to bite size chucks, so he could get it, then move to the next thing. Postive reward rather than punishments.

Don't think i come across a speech therapist that has done anything yet, but assess and a few preprinted sheets..

Butt out. (to put it politely)

Wetaugust. Am with you on that one man!

Not pull faces when we say we are home schooling. No, wait a minute, they all do that.

For me: Taking me seriously, not judging me, telling me not to be so hard on myself.
For my DS: Proper multidisciplinary assessment and DX at age 3 and getting inclusive place at pre-school (ie funding for extra staff.) I know others have had probs with paeds being anti-DX and refusing to test under certain ages but it was the best thing that could ever have been done for my DS. He has not needed a statement at infants because pre-school provision was so effective.

Thank you - I just wish professionals and service providers would read this thread!

Believe me Bright, they do!

LOL!

The lovely TA who just "gets" DS and can head him off if he even looks like he is starting to get upset - and at the same time take no nonsense from him and can get him to do most things he doesn't really want to do in class.
She spends time buying her own books to read at home and resources to use in school and really invests her heart and soul in the children she looks after.
We are going to miss her so much when DS moves to high school in Sept.

I love the contributions - am going to start putting them together re4ady for the big day. Eek...I'm not a public speaker and I'm as nervous as hell but I will try and do us all justice!

Don't think i come across a speech therapist that has done anything yet, but assess and a few preprinted sheets..

Ditto.

Like others here, sadly the only professionals involved in ds's life that have actually done anything concrete directly to help him and further his development, or provide us as a family any clear strategies have been ones we've paid for (our ABA team).

The only actual, real-life support provided in nearly 2 years since dx has been 4 hours of 'social skills playgroup', which was ok (though having had a year of ABA behind him, ds was streets ahead of the group).

Other than that, ds has had no help, support, practical strategies, respite, training, or intervention whatsoever that we haven't paid for.

The parents on this board have been pretty useful at times though

Also to say that over the years, as the differences became more apparent, the school have increased the provision for DS.He is in Mainstream school. He now gets group social skills, group sports at lunchtime, typing lessons, they do his OT exercises, he has had handwriting classes as well as some support in class for breaking down literacy into chunks that he can manage, and fabulous teachers who despite his difficulties LIKE him, and so are willing to make changes to how they explain things and their teaching to accommodate him in class.
BUT they are not good with sensory issues and how to best accommodate these as it can be difficult for him.
I went to a meeting recently about SEN provision in the borough ( they are looking to expand it in line with the MS schools all expanding) and it seems like my experience is unusually positive and not the norm which is sad. The school have made every effort to help DS do well. ( I suspect that the fact that he is academically very able helps). All the break and lunch and transition time interventions help him be in a good frame of mind when he goes back to class so he can learn and so that he is also not disruptive to the others.
It sounds like a lot of schools could learn from this approach.